One size doesn't fit all : A thematic analysis of interviews with people who have stopped participating in Narcotics Anonymous in Norway

publishedVersio

Health related quality of life after extremely preterm birth: a matched controlled cohort study

<p>Abstract</p> <p>Background</p> <p>The majority of infants born before the last trimester now grow up. However, knowledge on subsequent health related quality of life (HRQoL) is scarce. We therefore aimed to compare HRQoL in children born extremely preterm with control children born at term. Furthermore, we assessed HRQoL in relation to perinatal and neonatal morbidity and to current clinical and sociodemographic characteristics.</p> <p>Method</p> <p><it>The Child Health Questionnaire </it>(CHQ-PF50) and a general questionnaire were applied in a population based cohort of 10 year old children born at gestational age ≤ 28 weeks or with birth weight ≤ 1000 grams in Western Norway in 1991-92 and in term-born controls, individually matched for gender and time of birth. The McNemar test and paired t-tests were used to explore group differences between preterms and matched controls. Paired regression models and analyses of interaction (SPSS mixed linear model) were used to explore potential effects of sociodemographic and clinical characteristics on HRQoL in the two groups.</p> <p>Results</p> <p>All 35 eligible preterm children participated. None had major impairments. Learning and/or attention problems were present in 71% of preterms and 20% of controls (odds ratio (OR): 7.0; 95% confidence interval (CI): 2.2 to 27.6). Insufficient professional support was described by 36% of preterm vs. 3% of control parents (OR: infinite; CI: 2.7 to infinite). Preterms scored lower on eight CHQ-PF50 sub-scales and the two summary scores, boys accounting for most of the deficits in areas of behavior, psychosocial functioning and parental burden. HRQoL was associated with learning and/or attention problems in both preterm and control children, significantly more so in preterms in areas related to health and parental burden. Within the preterm group, HRQoL was mostly unrelated to perinatal and neonatal morbidity.</p> <p>Conclusions</p> <p>HRQoL for children born extremely preterm, and particularly for boys, was described by parents to be inferior to that of children born at term, and sufficiently poor to affect the daily life of the children and their families. Learning and/or attention problems were reported for a majority of preterms, strongly influencing their HRQoL.</p

Long-term follow-up of self-reported mental health and health-related quality of life in adults born extremely preterm

Background Survival of extremely preterm (EP) birth is increasing, but long-term consequences are still largely unknown as their high survival rates are recent achievements. Aims To examine self-reported mental health, and health related quality of life (HRQoL) in a cohort of adults born EP in the early 1990s and individually matched term-born controls, and to describe development through the transition from teenager to adults. Methods Thirty-five eligible subjects were born at gestational age ≤ 28 weeks or with birth weight ≤ 1000 g during 1991–1992 in this population-based cohort from Western Norway. We assessed mental health using Youth Self-Report (YSR) at 18 years of age, and Adult Self-Report (ASR) at 27 years, and HRQoL by RAND-36 at 27 years. Data were analysed by unadjusted and adjusted mixed effects models with time by group as interaction term. Results At 27 years, 24 (69 %) EP-born and 26 (74 %) term-born controls participated. Scores for internalising problems, and syndrome scale anxious/depressed and withdrawn were higher among EP-born compared to term-born controls. For HRQoL, scores were similar in EP-born and term-born groups, except the domain physical functioning where EP-born scored lower. Development over time from 18 to 27 years showed increasing (i.e. deteriorating) scores for internalising, anxious/depressed, somatic complaints, and attention problems in the EP born group. For the term-born, scores for anxious/depression increased over time. Conclusions At 27 years of age, EP-born adults reported more internalising problems than term-born controls, while HRQoL was relatively similar except physical functioning. Mental health problems in the EP-born increased from adolescence to adulthood.publishedVersio

Development of health-related quality of life and subjective health complaints in adults born extremely preterm: a longitudinal cohort study

Purpose To study development trajectories to 34 years of age of health-related quality of life (HRQoL) and subjective health complaints in extremely preterm (EP) born subjects with and without disability, and to compare with term-born controls. Methods A Norwegian longitudinal population-based cohort of subjects born in 1982–85 at gestational age ≤ 28 weeks or with birth weight ≤ 1000 g and matched term-born controls completed the Norwegian version of the Short Form Health Survey-36 at ages 24 and 34 and the Health Behaviour in School-aged Children–Symptom Checklist at ages 17, 24 and 34 years. Data were analysed by unadjusted and adjusted mixed effects analyses with time by subject group as interaction term. Results A total of 35/49 (73%) surviving EP-born and 36/46 (78%) term-born controls participated at this third follow-up. EP-born subjects with severe disability reported clinical significant lower mean score in all domains compared to the term-born controls. Healthy EP-born subjects reported significantly lower mean scores for vitality, role emotional and mental health, and significantly higher mean score for total and psychological health complaints compared to term-born controls. There were no significant interactions with age regarding HRQoL and somatic health complaints, while there were significant differences in psychological health complaints; the EP-born scored higher at age 24 and lower at age 34. Conclusions EP-born adults at age 34 reported inferior HRQoL versus term-born peers, especially in the mental health domains, indicating that the negative differences observed at 24 years remained unchanged.publishedVersio

Longitudinal Study of Music Therapy’s Effectiveness for Premature Infants and Their Caregivers (LongSTEP): Feasibility Study With a Norwegian Cohort

Premature infants and their parents experience significant stress during the perinatal period. Music therapy (MT) may support maternal–infant bonding during this critical period, but studies measuring impact across the infant’s first year are lacking. This nonrandomized feasibility study used quantitative and qualitative methods within a critical realist perspective to evaluate the feasibility, acceptability, and suitability of the treatment arm of the Longitudinal Study of music Therapy’s Effectiveness for Premature infants and their caregivers (LongSTEP) (NCT03564184) trial with a Norwegian cohort (N = 3). Families were offered MT emphasizing parent-led infant-directed singing during neonatal intensive care unit (NICU) hospitalization and across 3 months post-discharge. We used inductive thematic analysis of semi-structured interviews with parents at discharge from NICU and at 3 months and analyzed quantitative variables descriptively. Findings indicate that: (1) parents of premature infants are willing to participate in MT research where parental voice is a main means of musical interaction; (2) parents are generally willing to engage in MT in NICU and post-discharge phases, finding it particularly interesting to note infant responsiveness and interaction over time; (3) parents seek information about the aims and specific processes involved in MT; (4) the selected self-reports are reasonable to complete; and (5) the Postpartum Bonding Questionnaire appears to be a suitable measure of impaired maternal–infant bonding. Parents reported that they were able to transfer resources honed during MT to parent–infant interactions outside MT and recognized parental voice as a central means of building relation with their infants. Results inform the implementation of a subsequent multinational trial that will address an important gap in knowledge.publishedVersio

Mental health and health related quality of life in mitochondrial POLG disease

We aimed to assess the impact of POLG disease on mental health and quality of life in 15 patients using the Symptom Checklist-90-R (SCL-90-R)and Short-Form 36 HealthSurvey (RAND-36). Wefound increased scores in all nine subscales of SCL-90-R, particularly phobic anxiety, depression and somatization. Further, patients reported considerably lower scores in all RAND-36 domains. This study revealed a global decline in mental health and poor quality of life in patients with POLG disease and highlights the need for increased awareness andsystematic assessment in order to improve their quality of life and mental health

Hvordan ivaretas samspillsveiledning til foreldre i norske nyfødtintensivenheter?

Bakgrunn: Nasjonale retningslinjer anbefaler at foreldre til prematurt fødte barn tilbys kunnskapsbasert samspillsveiledning mens barnet er innlagt på sykehus. Forskning viser at foreldreveiledningsprogrammet «Mother-Infant Transaction Program» (MITP-m) kan fremme vedvarende god utvikling og tilpasning i familier med prematurt fødte barn. Hensikt: Denne studien undersøker i hvilken grad programmets antatte kjerneelementer er implementert i norske nyfødtposter, og hvorvidt denne kunnskapen påvirker foreldres mestringstro i foreldrerollen like etter utskrivelse fra sykehuset. Metode: Totalt 150 foreldre fra åtte ulike nyfødtintensivenheter i Norge besvarte et elektronisk spørreskjema to uker etter at de ble utskrevet fra sykehuset. Spørreskjemaet besto av egenutviklede spørsmål om MITP-m samt to validerte spørreskjemaer. Vi har analysert dataene deskriptivt og gjennom regresjonsanalyser. Resultat: Foreldrene fortalte at de kk mye generell veiledning og opplæring. Samspillstemaer, slik som veiledning om tilstandsregulering og barns sosiale natur, syntes i mindre grad å være ivaretatt. Foreldre som bekreftet mye samspillskunnskap etter utskrivelsen, kk god oppfølging av de faste kontaktsykepleierne og den behandlende legen. Foreldrene var mye til stede på avdelingen, og de hadde betydelig støtte i sitt eget sosiale nettverk. Det sosiale nettverket er spesielt viktig for opplevd mestringstro i foreldrerollen etter utskrivelsen. Konklusjon: Foreldrene rapporterer om god oppfølging i nyfødtintensivavdelingene. De følte seg godt ivaretatt av dedikerte kontaktsykepleiere og behandlende leger. Det fremkommer ikke av resultatene om dette var relatert til ulike veiledningsprogrammer. Foreldreveiledning med søkelys på barnets tilstandsregulering og sosiale kapasitet og behov bør trolig styrkes

Cultural adaptation and harmonization of four Nordic translations of the revised Premature Infant Pain Profile (PIPP-R)

Publisher's version (útgefin grein)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 shortand 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.Not applicable.Peer Reviewe

Cultural adaptation and harmonization of four Nordic translations of the revised Premature Infant Pain Profile (PIPP-R)

BackgroundPreterm 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.MethodsPIPP-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.ResultsThe 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.ConclusionsThis 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.</p

Health-Related Quality of Life, emotional and behavioural difficulties and perception of pain after extreme preterm birth – a population-based longitudinal cohort study

Background: Rates of preterm birth vary widely among countries, proportions ranging from around 6% in Scandinavia, 12% in the United States to 18% in some African countries. Due to progress in perinatal medicine, there has been a substantial increase in survival after extreme preterm birth (gestational age < 28 weeks) over the past decades, accounting for about 0.4% of births in Norway. Extreme preterm birth poses tremendous challenges to neonates and their families from the very beginning. Preterm birth may have lifelong consequences for neurodevelopmental functioning in terms of motor, cognitive and psychosocial skills, and may contribute to development of various chronic diseases. When investigating these possible effects, researchers typically employ traditional measures of morbidity (i.e., objective measures of function). Self-reported opinions of health and well-being and how they vary throughout life have received less research attention. Aims: The overall aim of this dissertation work was to investigate how extreme preterm birth affects health and well-being throughout childhood and early adulthood. We compared the developmental trajectories of health-related quality of life (HRQoL), emotional and behavioural patterns, and perception of and responses to pain of subjects born preterm to those of matched control subjects born at term. Methods: This was a population-based longitudinal matched controlled cohort study of subjects born at a gestational age of ≤ 28 weeks or with a birth weight of ≤ 1000 grams and of gender- and age-matched term-born (TB) controls. The participants were born within a defined region of Western Norway during two periods: 1982-1985 (46 preterm babies) and 1991-1992 (35 preterm babies). The Child Health Questionnaire and Child Behaviour Checklist were applied when the children reached the age of 10 years and in late adolescence (18 years), supplemented with the Youth Self-Report, General Self-Efficacy, and health complaints questionnaire at 18 years; and the Short Form Health Survey-36 and health complaints questionnaire in young adulthood (24 years). At 18 years of age, their pain tolerance and pain perception were measured using a standardized Cold Pressor Task (hand in ice water). Results: The longitudinal response rates were high at 89% and 84%, respectively, for the preterm-born subjects, and 83% and 87%, respectively, for the control term-born subjects. The parents of the 1991-1992 preterm-born cohort reported that their children had inferior HRQoL in nearly all domains at 10 years of age, including the family and parent domains, and more emotional and behavioural difficulties compared to age-matched TB children. The differences were especially evident for preterm-born boys, but minor for preterm-born girls. When these children reached adolescence (age 18), the parents reported improved HRQoL and behaviour for the preterm-born boys, achieving scores approaching those of the TB boys. The girls, however, remained relatively unchanged. Early emotional and behavioural difficulties predicted less improvement in HRQoL for all participants. The preterm-born adolescents reported their HRQoL, behaviour, and pain perception to be relatively similar to those of their TB peers, but their actual pain tolerance was inferior, especially the preterm-born boys. General Self-Efficacy was associated with better HRQoL, behaviour, and pain tolerance for all participants. Also the 1982-1985 preterm-born cohort reported HRQoL and health complaints to be relatively similar to those of their TB peers when in their adolescence (age 17), except for inferior physical functioning for the impaired preterm-born subjects. At adulthood (age 24), the healthy preterm-born subjects reported poorer psychosocial functioning and more psychological health complaints compared to their TB peers. Conclusion: These findings demonstrate that extremely preterm-born subjects have inferior HRQoL and more behaviour problems in childhood, as reported by their parents. These characteristics improved through adolescence, especially for the boys. Severe behaviour problems in childhood predicted less improved HRQoL through puberty. At 18 years, extreme preterm-born subjects reported relatively similar HRQoL and behaviour as term-born controls, whereas in adulthood a tendency for inferior psychosocial HRQoL became apparent, particularly in those without disabilities. We also found lower pain tolerance but similar perception of pain at 18 years. Our findings underscore the importance of obtaining subjective knowledge of health and well-being, both from the perspective of parents and the preterm-born subjects. Moreover, it is important to observe changes through critical developmental phases in life, such as puberty, and to further explore the observed effects of gender that may be of importance. Finally, health professionals treating subjects who were born prematurely should be aware of a potential for unexpected pain responses in these individuals