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Parental control in different life contexts for paediatric cystic fibrosis patients

TL;DR: Parents may be more flexible and responsive to children’s difficulties associated with treatments than to other types of disturbing behaviours in their daily routine, while problems in peer interactions tend to evoke overprotective strategies.
Abstract: This study aimed to comprehensively describe parental control strategies (appropriate support, critical control or overprotection) in the distinct living contexts of paediatric cystic fibrosis patients (namely daily routine and peer interaction). Fourteen mothers and two fathers of children with cystic fibrosis participated in the study. Children’s ages ranged from 5 to 12 years old (M=7.00; SD=2.25). Participants answered the Interview on Childrearing Practices and The New Friends Vignettes and provided socio-demographic information concerning the family and clinical details about the child’s illness. Descriptive statistical analyses were performed. Appropriate support was the most frequently reported strategy in both contexts, with 83.9% in daily routine and 44.37% in peer interaction. In the daily routine context, reports of critical control were infrequent (15.68%), especially regarding the treatment for cystic fibrosis. In the peer interaction context, reports of overprotection were more frequent (38.48%) than reports of critical control (17.15%). Parents may be more flexible and responsive to children’s difficulties associated with treatments than to other types of disturbing behaviours in their daily routine, while problems in peer interactions tend to evoke overprotective strategies.

Summary (2 min read)

Introduction

  • Critical control includes parental behaviours that indicate rejection or criticism, and insult or ridicule both children’s behaviours and their individual characteristics (McShane & Hastings, 2009).
  • Conversely, behavioural control strategies (appropriate support) are related to positive developmental outcomes and a higher level of adherence in this population (Butcher & Nasr, 2015; Mikesell et al., 2017; Smith et al., 2010).
  • Since CF has strong repercussions in families’ daily routine as well as in children’s socio-emotional development, it is relevant to describe parental control practices to understand the main socialisation and treatment challenges experienced in this population, as well as the behavioural resources and risks parents may show in these contexts.

Method

  • The participants involved in this study comprised 14 mothers and 2 fathers of children diagnosed with CF for at least three months.
  • As inclusion criteria, children should have a confirmed CF diagnosis, be under CF outpatient medical treatment, and have a stable clinical condition.
  • The families attended an outpatient clinic of the public health system in Brazil, which mostly assists families from low-income backgrounds.

Demographic characteristics of the children’s families (N=16)

  • Interview on Childrearing Practices (Piccinini et al., 2007).
  • This is a semi-structured interview designed to evaluate parental strategies to regulate children’s behaviour.
  • The interviews were audio recorded, transcribed, and coded based on a previously defined coding system, based on the self-report and observational measures presented by Barber (1996) and McShane and Hastings (2009).
  • In the second situation, the mother goes to a playground with her child and meets a few other children who are about the same age as her child.

Results

  • The total number of analytical units under consideration was 236.
  • Appropriate support was the most frequently reported dimension in all six situations, with the food situation portraying the highest frequency.
  • The percentage of critical control was approximately five times lower when compared to appropriate support, while overprotection was reported only once by one participant.
  • Figure 2 presents the absolute frequencies of the three broader dimensions of parental control reported by each participant.
  • In the second step of the analysis, post hoc tests were used to confirm the significant difference found and multiple pairwise comparisons were performed.

Discussion

  • This study aimed to describe the parental control strategies utilised by mothers and fathers of children with CF in daily routine and peer interaction contexts.
  • Moreover, by individually considering the results of each of the six daily routine situations, the authors were able to observe that parents of this sample seem to behave even more flexibly and responsively to their children’s demands in treatment-related situations compared to other non-disease-related situations.
  • On the other hand, parents reported a relatively high frequency of critical control and overprotection in the context of peer interaction.
  • A second limitation refers to the measures used for the evaluation of parental control in the two evaluated contexts.
  • Parents of CF children seem to be more flexible and responsive to the child’s demands in treatment settings than when facing everyday conflicts related to feeding, sleeping, and behavioural issues or difficulties in their children’s interaction with peers.

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Análise Psicológica (2021), 1 (XXXIX): 93-105 doi: 10.14417/ap.1766
Parental control in different life contexts for paediatric cystic fibrosis patients
Catiele Paixão
*
/ Patrícia Alvarenga
*
/ Luísa Barros
**
/ Edna Lúcia Souza
***
*
Instituto de Psicologia, Universidade Federal da Bahia, Bahia, Brasil;
**
Faculdade de Psicologia,
Universidade de Lisboa, Lisboa, Portugal;
***
Faculdade de Medicina, Universidade Federal da Bahia,
Bahia, Brasil
This study aimed to comprehensively describe parental control strategies (appropriate support, critical
control or overprotection) in the distinct living contexts of paediatric cystic fibrosis patients (namely
daily routine and peer interaction). Fourteen mothers and two fathers of children with cystic fibrosis
participated in the study. Children’s ages ranged from 5 to 12 years old (M=7.00; SD=2.25). Participants
answered the Interview on Childrearing Practices and The New Friends Vignettes and provided socio-
demographic information concerning the family and clinical details about the child’s illness. Descriptive
statistical analyses were performed. Appropriate support was the most frequently reported strategy in
both contexts, with 83.9% in daily routine and 44.37% in peer interaction. In the daily routine context,
reports of critical control were infrequent (15.68%), especially regarding the treatment for cystic fibrosis.
In the peer interaction context, reports of overprotection were more frequent (38.48%) than reports of
critical control (17.15%). Parents may be more flexible and responsive to children’s difficulties
associated with treatments than to other types of disturbing behaviours in their daily routine, while
problems in peer interactions tend to evoke overprotective strategies.
Key words: Parental control, Parenting, Cystic fibrosis, Chronic illness.
Cystic fibrosis (CF) is an inherited genetic disorder that triggers various clinical manifestations
on the respiratory and digestive tracts. A CF diagnosis is usually established in early childhood,
especially because of the widespread implementation of newborn screening (Farrell et al., 2017).
Persistent chronic cough is the most common respiratory sign. More severe pulmonary complications
include an increased predisposition to chronic bacterial infections and acute symptoms such as cough,
dyspnoea, fatigue, and the increased production of and change in the colour of the sputum, lasting
from days to weeks (Boucher, 2013). The clinical repercussions in the gastrointestinal tract may
include nutrient malabsorption and a greater frequency of massive and fetid stools. For this reason,
CF children also commonly present malnutrition, growth impairment, and lifelong difficulties in
maintaining an adequate weight (Mota et al., 2016).
A variety of medications and procedures are often used in the treatment of CF (Boucher, 2013).
The extensive routine of symptoms management, which may include enzyme intake, respiratory
physiotherapy, and oxygen therapy, is typically time-consuming and, as such, the symptoms and
93
This study was partially supported by Coordenação de Aperfeiçoamento de Pessoal de Nível Superior, Brasil
(CAPES), Finance Code 001, and by the Fundação de Amparo à Pesquisa do Estado da Bahia, Brasil (FAPESB),
grant numbers N° BOL1124/2014 and 3345/201.
Correspondence concerning this article should be addressed to: Catiele Paixão, Instituto de Psicologia,
Universidade Federal da Bahia, Rua Aristides Novis, 197, Estrada de São Lázaro, CEP 40210-730, Salvador,
Bahia, Brasil. E-mail: cpaixao.psi@gmail.com

treatment lead to school absenteeism and restricted contact with peers (Borawska-Kowalczyk et
al., 2015; Kostakou et al., 2014). Moreover, children with CF may become more isolated and
withdrawn because of their dissatisfaction with their body image. CF children tend to report lower
levels of satisfaction with their bodies than healthy children (Pinquart, 2013a), which increases
as patients grow because the effects of the disease on physical appearance become more noticeable
and may prompt increased reactions from others (Groeneveld et al., 2012). Thus, children with
CF may become more isolated and withdrawn due to the implications of the disease on appearance,
time-consuming treatment regimens, physical performance, and socialisation constraints.
In addition to the difficulties in peer interactions, mealtime behaviour problems are more
commonly reported in the families of CF children than in healthy children or paediatric patients with
other chronic diseases, and tend to persist throughout development (Hammons & Fiese, 2010;
Sheehan et al., 2012). Such problems usually involve either the refusal of food or of a novel texture,
tantrums, crying, or whining behaviour (Driscoll et al., 2015; Ernst et al., 2011). These problems
are so frequent that parents report that, although their children may comply with other aspects of
care, feeding problems persist throughout development and remain worrisome (Filigno et al., 2012).
Finally, daily routines that include respiratory physiotherapy tend to prompt resistance and avoidance
in paediatric patients, who can misbehave and have temper tantrums in these situations (Williams et
al., 2007). Thus, mealtime problems and resistance to treatment procedures added to school
absenteeism, restricted contact with peers, and poor body image may result in a greater risk for
developing behavioural and emotional problems (Ernst et al., 2011), for example social withdrawal,
anxiety, depression, rule-breaking, and aggressive behaviour. A number of studies have shown
increased rates of behavioural and emotional problems in paediatric CF patients compared to children
with other chronic illnesses (Pinquart & Shen, 2011) or healthy children (Kostakou et al., 2014).
Emotional and behaviour problems constitute additional challenges for parents raising a CF
child, as they need to persuade the child to comply with a demanding treatment regimen, while
still going through all other normative development tasks. Strategies used by parents to regulate
their children’s behaviour can either effectively contribute to control behaviour, or to intensifying
these problems. The relationship between parenting strategies and children’s socio-emotional
development has been explored through different theoretical perspectives; most distinguish
between coercive or power assertive practices and inductive or non-coercive strategies (Baumrind,
1966; Grusec & Davidov, 2010; Hoffman, 1975, 1994).
The parental control model maintains this distinction by proposing two types of parental practices:
psychological control and behavioural control (Barber, 1996; McShane & Hastings, 2009).
Psychological control specifies intrusive or coercive strategies that interfere with or invalidate the
child’s psychological or emotional experiences and expressions. This type of parental control is
divided into two distinctive dimensions: critical control and overprotection. Critical control includes
parental behaviours that indicate rejection or criticism, and insult or ridicule both children’s
behaviours and their individual characteristics (McShane & Hastings, 2009). For example, when
parents say “you’re very stupid, you don’t do anything right” or when they threaten to stop loving
the child for misbehaving, they are using critical control. Overprotection, on the other hand, refers
to excessive or unnecessary protection that restricts the child’s autonomy and hinders or reduces
new socio-emotional experiences (McShane & Hastings, 2009). For instance, when parents do not
allow the child to run so as not to fall or when they say something like “do you want to go home and
play with Mommy?” in situations where the child shies away from interacting with another child.
Conversely, behavioural control is essentially inductive. This dimension includes the provision
of appropriate support, which corresponds to parental behaviours that promote socio-emotional
development through the stimulation of autonomy. Thus, it involves the contingent provision of
structuring, encouragement, praise, guidance, and nurturance (McShane & Hastings, 2009). For
example, when parents explain to their children that they should not eat sweets before lunch, so
94

as not to spoil their appetite, or when they encourage a shy child by saying “why don’t you talk
to your new friend?”, they are implementing behavioural control.
Previous research with CF children has revealed that appropriate support strategies such as
talking to the child, describing their behaviours, valuing the child’s verbalisations, and praising
their performance positively contribute to the child’s compliance and adherence to treatment
(Butcher & Nasr, 2015). Behavioural control strategies are also related to positive developmental
outcomes in chronically ill children, such as more positive affective expressiveness,
communication skills, social responsiveness (Tluczek et al., 2015), social competence, and fewer
incidences of internalising and externalising problems (Scholten et al., 2013). On the other hand,
overprotection and critical control are related to problematic mealtime behaviours (Driscoll et al.,
2015), poor psychosocial functioning (Cappelli et al., 1989) and a lower adherence to treatment
(Butcher & Nasr, 2015) in CF children. Indeed, parents of children with chronic health problems
tend to be more critical and overprotective, and to show less warmth towards their children than
the parents of healthy children (Pinquart, 2013b). It is possible that such trends stem from the
parents’ understanding of the severity of the diagnosis and from the pressure to comply with the
treatment. However, prioritising harsh or coercive interactive patterns may lead to an increased
level of internalised problems in children (Smith et al., 2010) and fewer positive outcomes in
physical health, as well as in the overall course of their development (Tluczek et al., 2015).
Current study
CF has strong repercussions in both children’s daily routines and their interactions with peers, as
well as requires compliance with a rigorous treatment regimen. Parental control strategies can foster
or hinder children’s cooperation with routine treatment procedures and their competence for peer
interaction. Research has identified the association between psychological control strategies
(overprotection and critical control), behaviour problems, and a lower adherence to treatment in
chronically ill children (Butcher & Nasr, 2015; Driscoll et al., 2015; Sheehan et al., 2012; Smith et
al., 2010). Conversely, behavioural control strategies (appropriate support) are related to positive
developmental outcomes and a higher level of adherence in this population (Butcher & Nasr, 2015;
Mikesell et al., 2017; Smith et al., 2010). To the best of our knowledge, only a few studies attempted
to explore these dimensions of parental control in families with paediatric CF patients (Cappelli et
al., 1989; Pinquart, 2013b), but none of them examined these two dimensions of parental control in
different living contexts. Since CF has strong repercussions in families’ daily routine as well as in
children’s socio-emotional development, it is relevant to describe parental control practices to
understand the main socialisation and treatment challenges experienced in this population, as well
as the behavioural resources and risks parents may show in these contexts. The aim of the current
study is to describe the control strategies reported by parents of CF children in two different contexts
of their children’s life. We were guided by the following research question: What control strategies
are used by parents with CF children during their daily routine, including treatment and peer
interactions?
Method
Participants
The participants involved in this study comprised 14 mothers and 2 fathers of children
diagnosed with CF for at least three months. As inclusion criteria, children should have a confirmed
CF diagnosis, be under CF outpatient medical treatment, and have a stable clinical condition. The
95

families attended an outpatient clinic of the public health system in Brazil, which mostly assists
families from low-income backgrounds. Mothers had an average of 10.60 (DP=4.40) years of
education; similarly, fathers had an average of 10.00 (SD=3.56) years. Most mothers did not work
outside the home (37.5%), but most fathers did (81.3%), and 62.5% of the parents lived together.
The children were 8 boys and 8 girls, with ages ranging from 5 to 12 years (M=7.00; SD=2.25),
and they attended elementary or middle school. The average monthly income of the families was
approximately twice the Brazilian minimum wage (Table 1). During data collection, all children
were medically stable and using treatments including oral medications such as vitamins (100%)
and pancreatic enzymes supplementation (87.5%), chest physiotherapy (75%), physical activity
(50%), and/or oxygen therapy (12.5%). No child in the sample has had a lung transplant.
Table 1
Demographic characteristics of the children’s families (N=16)
Variables N Minimum Maximum % Mean (SD)
Child sex Male
08 50.00
Female
08 50.00
Child’s age (years)
05 012.0 7.00 (2.25)
Child’s schooling (years)
01 007.0 2.25 (1.88)
Age of diagnosis (months)
01 084.0 23.75 (26.12)
Time since diagnosis (months) 12 120
.0 60.12 (29.63)
Mothers age (years) 23
040.0 33.27 (5.36)
Mothers schooling (years)
02 016.0 10.60 (4.40)
Mothers with full- or part-time jobs
06 37.50
Fathers age (years) 24
042.0 34.50 (5.20)
Fathers schooling (years)
04 016.0 10.00 (3.56)
Fathers with full- or part-time jobs 13 81.3
0
Parental cohabitation Yes 10 62.5
0
No
06 37.50
Family income (minimum wages) Up to 1
0425.00
Between 1 and 3
06 37.50
Above 3 05 31.25
Note. The mothers age, mother’s schooling, mother’s job, and family income variables have 15 valid cases because in one case
the main caregiver was not able to provide information about the child’s mother or family income.
Measures
Interview on Childrearing Practices (Piccinini et al., 2007). An adapted version of this interview
was used to evaluate parental control in participants’ daily routines. This is a semi-structured
interview designed to evaluate parental strategies to regulate children’s behaviour. The original
interview includes six common daily situations, involving children’s inappropriate behaviour or
disobedience. The original measure was adapted for this study in order to include the most
common daily situations for parents and children with CF: (a) food: the child refuses to eat; (b)
medicine: the child refuses to take medicines or enzymes; (c) physiotherapy: the child refuses to
undergo respiratory physiotherapy or oxygen therapy; (d) sleep situation: the child refuses to sleep
at night; (e) tantrum: the child throws a tantrum when something is denied to them; and (f) school:
the child refuses to go to school. Parents were asked to consider each situation and think about
what they usually did when their children displayed these behaviours or how they would react if
the situation occurred. Parents could report as many strategies as they wished. The interviews
were audio recorded, transcribed, and coded based on a previously defined coding system, based
on the self-report and observational measures presented by Barber (1996) and McShane and
Hastings (2009). This system includes 9 distinct and mutually exclusive categories grouped within
the broader dimensions of appropriate support, critical control, and overprotection.
The appropriate support dimension includes four categories: (1) Rule-setting, which refers to
information about rules and limits set for children’s behaviour: “Saying that she must go, that it is
96

her obligation to go to school, just as I have to go to work, she has to study”; (2) Reasoning,
explanations which describe natural consequences of the child’s behaviour to her/himself or others:
I say, ‘this medicine is good for your health, for you to stay strong, fit. Strong to go to school, to
study, and to play with your classmates’”; (3) Encouragement and warmth, displays of support and
affection, including praise and positive comments in routine situations: “Look at mommy, breathe,
relax, it will be all right”; (4) Sensitive Support, regarding the assurance of the necessary care or
help when coping is difficult for the child because of a new challenge or extreme situation: “He
lies down, I stay with him until he sleeps” (when the child was hospitalised because of a crisis).
The critical control dimension includes four other categories: (5) Criticism, regarding hostility,
rejection, or humiliation towards the child: “If you don’t study, you’ll look stupid”; (6) Emotional
manipulation, attempting to manipulate the child’s behaviour through emotional blackmail such as
guilt induction or withdrawing love or attention. It also includes emotional invalidation. For
example: “I do everything for you, I buy nothing for myself, just for you, and you keep disobeying
me like that”; (7) Physical punishment, physical interventions that cause pain in the child: “If she
had a tantrum, I think I’d slap her”; (8) Threat, verbal threats to punish the child either physically
or psychologically: “Go to sleep otherwise you will take a beating”. Finally, the overprotection
dimension includes only one category: (9) Overprotection, which refers to excessive or unnecessary
parental care or assistance: “When he cries so much because he doesn’t want to go to school, then
I leave him at home”. The analysis of the interviews was carried out by two independent coders
(undergraduate psychology students) who received 60 hours of extensive training. Reliability was
established based on 10 interviews and reached 0.75 (Cohen’s Kappa), regarded as excellent
(Cicchetti & Sparrow, 1981). After coding all the strategies reported in each interview, the
frequencies in the 9 categories were computed.
The New Friends Vignettes (NFV) (McShane & Hastings, 2009) was used to assess parental
control in the peer interaction context. This measure assesses parental control when faced with
children’s behavioural inhibition and shyness in peer interaction. It presents two hypothetical
situations in which parents and children meet other parents and children. The first situation describes
a scenario in which the mother goes to her friend’s home with her child. The mothers friend also
has a child who is about the same age as her own child, but both children have never met before. In
the second situation, the mother goes to a playground with her child and meets a few other children
who are about the same age as her child. Her child already knows just one of the children playing in
the playground; all the others are unknown to her. In the current study, the first situation will be
referred to as one unknown child situation, and the second as several unknown children situation.
For each situation, the parent responds to 18 items using a three-point Likert scale: 0 (no), 1 (maybe),
or 2 (yes). The 36 items describe things he/she could say or do which correspond to the three broader
dimensions of parental control (appropriate support, critical control, and overprotection). The score
in each subscale corresponds to the sum of all answers and can vary between 0 and 24. This scale
was adapted to Portuguese (Lins et al., 2012) and showed acceptable internal consistency (Cronbach’s
alpha): 0.70 for critical control, 0.69 for overprotection, and 0.72 for appropriate support.
Procedure
This study was registered and approved by the National Commission for Research Ethics (CEP-
CONEP/Brazil – process number: 2.553.871). The parents of children diagnosed with CF attending
a public outpatient clinic were invited to participate in this study and were evaluated when waiting
for a routine medical visit. All the parents who met the inclusion criteria provided informed consent
and participated in the study. During a one-on-one interview with the researcher, participants
provided socio-demographic and health information about the child and responded to both the
Interview on Parental Childrearing Practices and to the NFV.
97

Citations
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01 Feb 2017
TL;DR: It is recommended that diagnoses associated with CFTR mutations in all individuals, from newborn to adult, be established by evaluation of CFTR function with a sweat chloride test.
Abstract: Objective Cystic fibrosis (CF), caused by mutations in the CF transmembrane conductance regulator ( CFTR ) gene, continues to present diagnostic challenges. Newborn screening and an evolving understanding of CF genetics have prompted a reconsideration of the diagnosis criteria. Study design To improve diagnosis and achieve standardized definitions worldwide, the CF Foundation convened a committee of 32 experts in CF diagnosis from 9 countries to develop clear and actionable consensus guidelines on the diagnosis of CF and to clarify diagnostic criteria and terminology for other disorders associated with CFTR mutations. An a priori threshold of ≥80% affirmative votes was required for acceptance of each recommendation statement. Results After reviewing relevant literature, the committee convened to review evidence and cases. Following the conference, consensus statements were developed by an executive subcommittee. The entire consensus committee voted and approved 27 of 28 statements, 7 of which needed revisions and a second round of voting. Conclusions It is recommended that diagnoses associated with CFTR mutations in all individuals, from newborn to adult, be established by evaluation of CFTR function with a sweat chloride test. The latest mutation classifications annotated in the Clinical and Functional Translation of CFTR project (http://www.cftr2.org/index.php) should be used to aid in diagnosis. Newborns with a high immunoreactive trypsinogen level and inconclusive CFTR functional and genetic testing may be designated CFTR - related metabolic syndrome or CF screen positive, inconclusive diagnosis; these terms are now merged and equivalent, and CFTR - related metabolic syndrome/CF screen positive, inconclusive diagnosis may be used. International Statistical Classification of Diseases and Related Health Problems, 10th Revision codes for use in diagnoses associated with CFTR mutations are included.

143 citations

01 Jan 2013
TL;DR: This RCT supports the efficacy of a protocol-based group intervention for children with chronic illnesses and their parents, and adds a parental component to the intervention contributed to the persistence of the effects.
Abstract: OBJECTIVE: To investigate the efficacy of a cognitive-behavioral group intervention for children with chronic illnesses and to test the effect of an added parent component. METHODS: Children (n = 194) and their parents participated in a multicenter randomized clinical trial comparing a child-only intervention and a parent-child intervention to a wait-list control group. Primary outcomes were parent- and self-reported internalizing and externalizing problems; secondary outcomes were child disease-related coping skills (information seeking, relaxation, social competence, medical compliance, and positive thinking). Assessments took place at baseline and at 6- and 12-month follow-ups. Intention-to-treat mixed-model analyses were performed to test the difference in change in outcomes. RESULTS: The intervention had a positive effect on changes in parent-reported internalizing problems, child-reported externalizing problems, information seeking, social competence, and positive thinking. The additional effect of parental involvement was observed on parent-reported internalizing problems, child-reported externalizing problems, information seeking, and social competence. Illness severity and illness type did not moderate the effects. There were no intervention effects on child-reported internalizing problems, parent-reported externalizing problems, relaxation, or medical compliance. Of the families in the wait-list control group, 74% sought alternative psychological support during the intervention period. CONCLUSIONS: This RCT supports the efficacy of a protocol-based group intervention for children with chronic illnesses and their parents. Adding a parental component to the intervention contributed to the persistence of the effects. Future research should focus on moderating and mediating effects of the intervention.

70 citations

Journal Article
TL;DR: Child problem behaviours are common in children with CF, persist and are often predicted by the mental health of the parent, and routine surveillance for and management of child problem behaviours is recommended.
Abstract: Background In cystic fibrosis (CF), problems with sleep, eating/mealtime behaviours, physiotherapy adherence and parental mental health issues are common, yet their natural history and the extent of service use to address them are unknown. Objective Follow up the 2007 cohort to determine: (1) prevalence of child sleep, eating/mealtime behaviours, physiotherapy adherence, and externalising/internalising problem behaviours and primary caregiver mental health status after a 3-year period; (2) natural history of child behaviours; (3) potentially modifiable predictors of persistent problems; and (4) service use for behaviours. Method Design Prospective cohort. Setting: Royal Children9s Hospital, Monash Medical Centre and Sydney Children9s Hospital (Australia) CF clinics. Participants Caregivers, of children aged 3–8 years, who completed the baseline questionnaire. Main outcome measures Child sleep, eating/mealtime behaviours, adherence with therapy and externalising and internalising behaviours. Predictors: parenting style (low warmth), caregiver mental health status and sleep quality at baseline. Results 102 of 116 (88%) families participated. The prevalence of sleep and eating/mealtime problems at follow-up was similar to baseline. The prevalence of caregiver mental health symptoms remained higher than the community data. 71 out of 102 (70%) of the children experienced at least one persistent behaviour problem. Caregiver mental health difficulties predicted persistent child moderate to severe sleep problems (adjusted OR 6.5, 95% CI 1.2 to 36.2, p=0.03) and their persistently poor adherence to the physiotherapy regimen (adjusted OR 3.5, 95% CI 1.3 to 9.2, p=0.01). Conclusions Child problem behaviours are common in children with CF, persist and are often predicted by the mental health of the parent. Routine surveillance for and management of child problem behaviours are recommended.

19 citations

Journal ArticleDOI
15 Dec 2016
TL;DR: Conclui-se that as caracteristicas clinicas e laboratoriais dos pacients descritos foram semelhantes aos relatados na literatura e destacam a associacao entre insuficiencia pancreatica e o genotipo dos pacientes, enfatizando a importância do estudo genetico na determinacao do prognostico dos pac patients.
Abstract: Introducao: a Fibrose Cistica (FC) e a doenca autossomica recessiva mais comum e letal na populacao de origem caucasoide. Causada por mutacoes no gene que codifica a proteina CFTR, no qual ja existem mais de 2.000 mutacoes identificadas, sendo a mutacao F508del a mais frequente. Esta doenca apresenta-se de forma multissistemica com quadro clinico altamente variado e com consideravel diversidade na gravidade e na progressao da doenca. Alguns estudos correlacionam os sintomas ao genotipo dos pacientes. Objetivo: descrever o genotipo e apresentacao clinica dos pacientes homozigotos ou heterozigotos para esta mutacao F508del. Metodologia: foi realizada a descricao de uma serie de casos de pacientes diagnosticados com FC que apresentam a mutacao F508del, acompanhados pelo Ambulatorio Multidisciplinar de FC do Complexo Hospitalar Universitario Prof. Edgard Santos do Estado da Bahia. Resultados: Dez (45,4%) criancas eram homozigotos para a mutacao e 12/22 (54,5%) heterozigotos. As principais manifestacoes clinicas que levaram ao diagnostico foram: insuficiencia pancreatica (95,4%), sintomas respiratorios (85,2%), dificuldade em ganhar peso (88,5%), esteatorreia (73,3%), e ritmo intestinal alterado (53,8%). A idade de inicio dos sintomas (mediana 0,16 anos) e do diagnostico (mediana 0,58 anos) foram precoces, refletindo a gravidade da doenca. Conclusoes: Conclui-se que as caracteristicas clinicas e laboratoriais dos pacientes descritos foram semelhantes aos relatados na literatura e destacam a associacao entre insuficiencia pancreatica e o genotipo dos pacientes, enfatizando a importância do estudo genetico na determinacao do prognostico dos pacientes, em especial em populacoes altamente miscigenadas, como no Brasil.

1 citations

References
More filters
Journal ArticleDOI
TL;DR: In this paper, three models of parental control-permissive, authoritarian, and authoritative-were described and contrasted, and the relation between freedom and control was examined and the position defended that authoritative control may effectively generate in the child, behavior which while well socialized is also wilful and independent.
Abstract: Three models of parental control-permissive, authoritarian, and authoritative-are described and contrasted. Pertinent findings concerning the effects on child behavior of component disciplinary practices are reviewed. With these and other findings as the basis for discussion, several propositions concerning the effects on child behavior of parental control variables are critically examined. Finally, the relation between freedom and control is examined and the position defended that authoritative control may effectively generate in the child, behavior which while well socialized is also wilful and independent.

2,217 citations


"Parental control in different life ..." refers background in this paper

  • ...…parenting strategies and children’s socio-emotional development has been explored through different theoretical perspectives; most distinguish between coercive or power assertive practices and inductive or non-coercive strategies (Baumrind, 1966; Grusec & Davidov, 2010; Hoffman, 1975, 1994)....

    [...]

Journal ArticleDOI
TL;DR: The article traces the history of the construct of parental psychological control of children, and distinguishes psychological control theoretically and empirically from more behaviorally oriented control.
Abstract: This article argues for the value in socialization research of focusing explicitly on the construct of parental psychological control of children--control that constrains, invalidates, and manipulates children's psychological and emotional experience and expression. The article traces the history of the construct and distinguishes psychological control theoretically and empirically from more behaviorally oriented control. 2 new measures of psychological control are developed. Data from 3 separate studies are presented which indicate that psychological control can be adequately measured across demographically varied samples and mode of measurement. In both cross-sectional and longitudinal analyses, psychological control, particularly as perceived by preadolescents and adolescents, is consistently predictive of youth internalized problems (depression) and, in some cases, externalized problems (delinquency). In contrast, behavioral control is related primarily to externalized problems.

2,168 citations


"Parental control in different life ..." refers methods in this paper

  • ...The parental control model maintains this distinction by proposing two types of parental practices: psychological control and behavioural control (Barber, 1996; McShane & Hastings, 2009)....

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  • ...The interviews were audio recorded, transcribed, and coded based on a previously defined coding system, based on the self-report and observational measures presented by Barber (1996) and McShane and Hastings (2009)....

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Journal Article
TL;DR: A set of criteria based upon biostatistical considerations for determining the interrater reliability of specific adaptive behavior items in a given setting was presented and guidelines for differentiating type of adaptive behavior that are statistically reliable from those that are reliable in a clinical or practical sense were delineated.
Abstract: A set of criteria based upon biostatistical considerations for determining the interrater reliability of specific adaptive behavior items in a given setting was presented. The advantages and limitations of extant statistical assessment procedures were discussed. Also, a set of guidelines for differentiating type of adaptive behavior that are statistically reliable from those that are reliable in a clinical or practical sense was delineated. Data sets were presented throughout in order to illustrate the advantages of recommended statistical procedures over other available ones.

2,017 citations


"Parental control in different life ..." refers methods in this paper

  • ...Reliability was established based on 10 interviews and reached 0.75 (Cohen’s Kappa), regarded as excellent (Cicchetti & Sparrow, 1981)....

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Journal ArticleDOI
TL;DR: In this article, a consensus committee of 32 experts in CF diagnosis from 9 countries to develop clear and actionable consensus guidelines on the diagnosis of CF and to clarify diagnostic criteria and terminology for other disorders associated with CFTR mutations.

520 citations

01 Dec 2011
TL;DR: Resenha as mentioned in this paper describes a estatistica usando o SPSS Referencia Field, A.A. Resenha et al. (2009).
Abstract: Resenha: Descobrindo a estatistica usando o SPSS Referencia Field, A. (2009). Descobrindo a estatistica usando o SPSS. Porto Alegre: Artmed.

459 citations


"Parental control in different life ..." refers methods in this paper

  • ...Then, mean (M), standard deviation (SD) and median (Mdn) were calculated, and the magnitude of the differences between parental control strategies for each context separately was examined using non-parametric statistics (Field, 2009)....

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Frequently Asked Questions (1)
Q1. What have the authors contributed in "Parental control in different life contexts for paediatric cystic fibrosis patients" ?

This study aimed to comprehensively describe parental control strategies ( appropriate support, critical control or overprotection ) in the distinct living contexts of paediatric cystic fibrosis patients ( namely daily routine and peer interaction ). Fourteen mothers and two fathers of children with cystic fibrosis participated in the study. Participants answered the Interview on Childrearing Practices and The New Friends Vignettes and provided sociodemographic information concerning the family and clinical details about the child ’ s illness. Appropriate support was the most frequently reported strategy in both contexts, with 83. In the daily routine context, reports of critical control were infrequent ( 15. 68 % ), especially regarding the treatment for cystic fibrosis. In the peer interaction context, reports of overprotection were more frequent ( 38. 48 % ) than reports of critical control ( 17. 15 % ).