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An Australian study of adolescents with cystic fibrosis: Perceived supportive and nonsupportive behaviors from families and friends and psychological adjustment
Abstract
To identify and compare perceived supportive and nonsupportive behaviors exhibited by family members and friends toward adolescents with cystic fibrosis (CF), and to examine the relationships between supportive and nonsupportive behaviors and adolescents' psychological adjustment.
Participants were 35 adolescents with CF attending the Women's and Children's Hospital in South Australia. Perceived supportive and nonsupportive behaviors were assessed using an adapted version of the Chronic Disease Support Interview. The psychological adjustment of the adolescents was assessed using the Youth Self Report Form. Repeated-measures analyses of variance were performed to compare the support provided by family members and friends. Multiple regression analyses assessed the contribution of supportive and nonsupportive behaviors for the prediction of psychological adjustment.
Family members provided more tangible support than friends who, conversely, provided more companionship support. Overall, family members scored higher than friends on ratings for supportive behaviors. No differences were observed between family members and friends on ratings for nonsupportive behaviors. Rating of nonsupportive behaviors for family members was found to be the strongest predictor of psychological adjustment.
Family members and friends provide different types of support. Family members provide more tangible help with treatment tasks and adolescents provide more companionship. Overall, this study demonstrated the importance of addressing nonsupportive as well as supportive behaviors when investigating the impact of support on the psychological adjustment of adolescents with a chronic illness.
... Likewise, other investigations of the social experiences of individuals with chronic illness have also indicated that difficulties with communication and support received from close family members and friends can have a significant negative impact on their psychological well-being (Lepore & Helgeson, 1998;Lepore & Revenson, 2007). Given that individuals with CF often report hesitation in disclosing details of their illness to friends and acquaintances, it is common that individuals with CF turn to their parents for support regarding CF-related concerns (Graetz, Shute, & Sawyer, 2000). Furthermore, adolescents and young adults with CF often obtain independence from the family unit later than individuals without chronic illness and this increases support needed from the family (Hamlett et al., 1996;McGuffie et al., 2008). ...
... Furthermore, adolescents and young adults with CF often obtain independence from the family unit later than individuals without chronic illness and this increases support needed from the family (Hamlett et al., 1996;McGuffie et al., 2008). What is noted, however, is that parents are usually more adept at providing support regarding practical and medical aspects of CF rather 5 than support for emotional difficulties related to CF (Graetz et al., 2000). Thus, it is evident that understanding the processes that lead to these difficulties in parent-child communication in families coping with CF is important for this group. ...
... Research has shown that social constraints between patients and partners negatively impact the psychological adjustment of individuals with breast cancer (Cordova, Cunningham, Carlson, & Andrykowski, 2001) and prostate cancer (Lepore & Helgeson 1998) and are related to lower adherence to self-care for individuals with diabetes (Braitman et al., 2008). Research examining individual and family-based adjustment for individuals with CF has highlighted that support received from the social environment can have a significant impact on their psychological adjustment (e.g., Cappelli et al., 1989;Graetz et al., 2000;Peek, 2001;Wong & Heriot, 2008). Thus, the SCP model appears fitting to apply to this patient group and has the potential to make a unique contribution to the literature on both CF and the SCP model. ...
In the last two decades the medical understanding of Cystic Fibrosis (CF) has dramatically
improved, however, there are still significant gaps in our understanding of the psychological
adjustment of families coping with CF. We examined the utility of the Social Cognitive
Processing (SPC) Model in understanding interactions of parents and young people with CF.
We also examined the relationship between social constraints, a key construct in the SCP
model, sense of coherence and other psychological adjustment indicators for young people
with CF. Participants comprised 49 individuals with CF, aged 16 to 25, recruited through
state-based CF organisations in Australia. The results indicated that participant ratings of
difficulties with communication (social constraints) were positively associated with ratings of
depression, anxiety, and stress and negatively related to ratings of positive affect and seeing
life challenges as predictable, manageable and meaningful (sense of coherence). Ratings of
sense of coherence were also positively related to ratings of positive affect and negatively
related to ratings of depression, anxiety and stress. A significant mediating effect of sense of
coherence was also identified in the relationships between social constraints and positive
affect and social constraints and stress. The theoretical and clinical implications of these
findings are discussed.
... Likewise, other investigations of the social experiences of individuals with chronic illness have also indicated that difficulties with communication and support received from close family members and friends can have a significant negative impact on their psychological well-being (Lepore & Helgeson, 1998;Lepore & Revenson, 2007). Given that individuals with CF often report hesitation in disclosing details of their illness to friends and acquaintances, it is common that individuals with CF turn to their parents for support regarding CF-related concerns (Graetz, Shute, & Sawyer, 2000). Furthermore, adolescents and young adults with CF often obtain independence from the family unit later than individuals without chronic illness and this increases support needed from the family (Hamlett et al., 1996;McGuffie et al., 2008). ...
... Furthermore, adolescents and young adults with CF often obtain independence from the family unit later than individuals without chronic illness and this increases support needed from the family (Hamlett et al., 1996;McGuffie et al., 2008). What is noted, however, is that parents are usually more adept at providing support regarding practical and medical aspects of CF rather 5 than support for emotional difficulties related to CF (Graetz et al., 2000). Thus, it is evident that understanding the processes that lead to these difficulties in parent-child communication in families coping with CF is important for this group. ...
... Research has shown that social constraints between patients and partners negatively impact the psychological adjustment of individuals with breast cancer (Cordova, Cunningham, Carlson, & Andrykowski, 2001) and prostate cancer (Lepore & Helgeson 1998) and are related to lower adherence to self-care for individuals with diabetes (Braitman et al., 2008). Research examining individual and family-based adjustment for individuals with CF has highlighted that support received from the social environment can have a significant impact on their psychological adjustment (e.g., Cappelli et al., 1989;Graetz et al., 2000;Peek, 2001;Wong & Heriot, 2008). Thus, the SCP model appears fitting to apply to this patient group and has the potential to make a unique contribution to the literature on both CF and the SCP model. ...
In the last two decades, the medical understanding of Cystic Fibrosis (CF) has dramatically improved, however, there are still significant gaps in our understanding of the psychological adjustment of families coping with CF. We examined the utility of the Social Cognitive Processing (SCP) Model in understanding the interactions of parents and young people with CF. We also examined the relationship between social constraints, a key construct in the SCP model, sense of coherence (SOC) and other psychological adjustment indicators for young people with CF. Participants comprised 49 individuals with CF, aged 16–25, recruited through state-based CF organisations in Australia. The results indicated that participant ratings of difficulties with communication (social constraints) were positively associated with ratings of depression, anxiety, and stress and negatively related to ratings of positive affect and seeing life challenges as predictable, manageable and meaningful (SOC). Ratings of SOC were also positively related to ratings of positive affect and negatively related to ratings of depression, anxiety and stress. A significant mediating effect of SOC was also identified in the relationships between social constraints and positive affect and social constraints and stress. The theoretical and clinical implications of these findings are discussed.
... Despite the large body of developmental literature on friendships within normative and clinical populations of youth, little is known about the presence and quality of friendships of youth with chronic illnesses, particularly youth with CF (Meijer, Sinnema, Bijstra, Mellenbergh, & Wolters, 2000;Spirito, DeLawyer, & Stark, 1991). Most often, pediatric research has focused on broad domains such as psychosocial functioning, social adjustment, or social activities (Meijer et al., 2000;Spirito et al., 1991), or on disease-related peer roles, such as certain forms of social support (e.g., Barker, Driscoll, Modi, Light, & Quittner, 2012;Graetz, Shute, & Sawyer, 2000;La Greca et al., 1995). Social support from peers may promote improved quality of life, adaptive psychological adjustment, and in some cases, greater treatment adherence (Bearman & La Greca, 2002;Helgeson, Lopez, & Kamarck, 2009;Herzer, Umfress, Aljadeff, Ghai, & Zakowski, 2009;La Greca et al., 1995). ...
... Social support from peers may promote improved quality of life, adaptive psychological adjustment, and in some cases, greater treatment adherence (Bearman & La Greca, 2002;Helgeson, Lopez, & Kamarck, 2009;Herzer, Umfress, Aljadeff, Ghai, & Zakowski, 2009;La Greca et al., 1995). However, despite the overlap between elements of social support often provided by peers and commonly assessed elements of positive friendship quality (e.g., companionship, emotional support), these constructs are not synonymous, nor do measures of social support often capture elements of negative friendship quality (Barker et al., 2012;Graetz et al., 2000;La Greca et al., 1995). When friendship quality has been examined in other chronic illness populations, emerging evidence suggests possible links with psychosocial functioning, quality of life, and disease management (Helgeson et al., 2009;Helgeson, Reynolds, Escobar, Siminerio, & Becker, 2007;Herzer et al., 2009). ...
... Additionally, future work should attend to possible nuances of measurement related to friendship quality among youth with CF. For example, disease-specific forms of social support may particularly contribute to positive friendship dynamics (e.g., Barker et al., 2012;Graetz et al., 2000;La Greca et al., 1995). Also, scales of positive and negative friendship quality that have been developed within normative populations may not adequately capture the unique nature of relationships among youth with CF, for whom in-person interactions are discouraged. ...
Objective During adolescence, the significance of peer relationships peaks, and the presence and quality of dyadic friendships impact
psychosocial outcomes. Yet, friendships have been studied infrequently among youth with chronic illness, particularly youth
with cystic fibrosis (CF). The current aims were to (1) describe friendships among adolescents with CF, including number,
duration, frequency of interactions, and positive/negative friendship qualities, and (2) explore associations between friendship
quality, treatment adherence, and health-related quality of life. Methods Participants (N = 42) reported on friendships with peers with and without CF; caregivers reported on adolescents’ adherence and quality of
life. Results Friendships with CF-peers were less common and lower quality than friendships with non-CF peers. Both positive and negative
friendship qualities were associated with adherence; positive friendship qualities were uniquely associated with quality of
life. Conclusions CF-related health promotion efforts may benefit from addressing the impact of friendships on adherence and quality of life.
... Surprisingly, few studies have directly assessed social support in this population, and no study has examined the relationships between social support and disease management (Gallant, 2003;Graetz, Shute, & Sawyer, 2000). The purpose of this dissertation was to develop and validate an illness-specific inventory of supportive and non-supportive behaviors for adolescents with CF. ...
... There were also clear differences between families and friends; most notably, differences between the types and amount of tangible and relational support. Consistent with previous literature (Graetz et al., 2000;La Greca et al., 1995;Shroff Pendley et al., 2002), families appear to provide more tangible support relative to friends, while friends seem to provide more relational support than families. These findings were also consistent from the descriptive results of the initial validation of the PASS-CF, which showed differences in the types of behaviors provided by family and friends. ...
... The role of family and friends in the management of a complex and burdensome chronic illness like CF continues to be an important, clinically relevant research question. This study replicated and built on the work of previous investigators Graetz et al., 2000; ...
This study documented the creation and initial validation of the Perceived Adolescent Social Support: Cystic Fibrosis (PASS-CF) inventory. The inventory was developed from semi-structured interviews of adolescents with cystic fibrosis (CF) and measured both supportive and non-supportive behaviors provided to adolescents by their family and friends. This study reports the findings from these interviews, results of the pilot testing of the measure, exploratory analyses of the utility of individual items, and the relationships between supportive and non-supportive behaviors and important clinical outcomes, such as treatment adherence, health-related quality of life (HRQoL), and other health outcomes. In particular, the study compared two measurement models suggested by popular definitions of social support. The "perceived support" model emphasized adolescents' cognitive appraisals of the support provided to them by family and friends, and the functional support model emphasized the utility of specific behaviors in managing CF. Results provided support for both models and provided insights into important next steps in the study of social support in adolescents with CF.
... For them, only the presence of their close friends provided sufficient emotional support. The importance of emotional support provided by friends has been highlighted in studies on adolescents with chronic diseases (Graetz, Shute, & Sawyer, 2000;Herzer, Umfress, Aljadeff, Ghai, & Zakowski, 2009;La Greca et al., 1995;Peters, Nawijn, & van Kesteren, 2014). Two studies (Graetz et al., 2000;Peters et al., 2014) emphasized different kinds of support, where family members on the one hand provided more tangible support than friends who, on the other hand, provided greater emotional support. ...
... The importance of emotional support provided by friends has been highlighted in studies on adolescents with chronic diseases (Graetz, Shute, & Sawyer, 2000;Herzer, Umfress, Aljadeff, Ghai, & Zakowski, 2009;La Greca et al., 1995;Peters, Nawijn, & van Kesteren, 2014). Two studies (Graetz et al., 2000;Peters et al., 2014) emphasized different kinds of support, where family members on the one hand provided more tangible support than friends who, on the other hand, provided greater emotional support. However, our results also highlighted the adolescents' distress due to the disbelief from their "non-close" friends and classmates and their feeling of being excluded from the group because their inability to participate in group activities. ...
Medically unexplained symptoms (MUS) are common among adolescents and are frequently encountered in primary care. Our aim was to explore how these adolescents and their parents experience the condition and its impact on their daily lives and to provide recommendations for health professionals. Using a qualitative approach, six focus groups and two individual interviews were conducted. These involved a total of ten adolescents with different types of MUS and sixteen parents. The respondents were recruited in a university hospital in Switzerland. A thematic analysis was conducted according to the Grounded Theory. The analysis of the data highlighted four core themes: disbelief, being different, concealing symptoms, and priority to adolescent's health. Transcending these themes was a core issue regarding the discrepancy between the strategies that adolescents and their parents use to cope with the symptoms. Health professionals should be made aware of the emotional needs of these patients and their families.
... 20 Furthermore, nonsupportive behaviors from family members, particularly parental nagging, was found to predict psychological maladjustment. 21 Summing up, parenting chronically ill adolescents may lead to conflict in the parent-adolescent relationship, which may lead to adherence problems and thereby to poorer outcomes. On the other hand, parents are also the adolescent's best support for handling their chronic disease. ...
... 29 Furthermore, another study on adolescents with CF found that parental nagging was a strong predictor of psychological adjustment and suggested that clinicians need to monitor adolescents' concerns regarding their parents' care behavior and, where appropriate, offer mediation. 21 On the other hand, as premature withdrawal of parental involvement may be associated with poor outcomes and adherence, 15,16 it is important that the parents balance involvement and relinquishment. ...
... In the context of CF, young people acknowledge that family members provide tangible support, with teenagers' perceived lack of support being related to psychosocial maladjustment (Graetz et al. 2000). Although a family-centred approach to caring for children in health services is recommended (Coyne 1997), there is little evidence of the nature of parental involvement in care at, or after, transition to adult services for young people with traditional diseases of childhood. ...
... Our study demonstrates that young people continue to perceive parents as supportive in a variety of healthrelated capacities both during and after transition to adult services. The perception of parents as providers of financial, physical and emotional support is not contentious and parallels both the 'physical' and 'emotional' support given by family and professionals in the contexts of domestic and hospice care (James 1992), and parents' 'tangible' and 'emotional' support of adolescents with CF (Graetz et al. 2000). Continued parental provision into young adulthood is common for most young people, both with and without a life-threatening or a long-term condition. ...
The majority of those diagnosed with cystic fibrosis (CF) now live to adulthood. In response to increased survival age, transition services have been developed to ensure smooth transfer from paediatric to adult specialist healthcare, although the majority of treatment and care continues to be delivered in the home. However, little is known about how young adults and staff conceptualise the nature of the parental role after young people have left paediatric care. The aim of this study is to explore the nature of parental support that is perceived to be available at this time. As part of a larger study of transitional care, semi-structured interviews were conducted with 50 young people with CF aged 13–24 years (32 with experience of transition and/or adult CF services) and 23 specialist healthcare professionals (14 working in adult care) across two CF centres in Southeast England. Interviews took place in young people’s homes or within CF services, using a topic guide and were recorded, transcribed and analysed thematically. Four domains of perceived parental support were identified by the young people interviewed, with varying degrees of continuity into adult care: (1) Providing non-clinical practical and emotional support; (2) Acting as ‘troubleshooters’ in times of health-related crisis; (3) Working in partnership with offspring in ongoing disease management in the home and clinic; (4) Acting as ‘protectors’ of their children. Young people and service staff expressed tensions in managing parental involvement in post-paediatric consultations and the degree to which parents should be aware of their offspring’s deteriorating health and social concerns. Parental anxiety and over-involvement was perceived by many young people and staff as unsupportive. We suggest that although health and social care providers are mindful of the tensions that arise for those leaving paediatric services, the place of parental support in adult care is currently contentious for these ‘new’ ageing populations.
... These findings resonate with other research on adolescents with CF that suggest that it should be recognized that some parents may need assistance in learning how to support their adolescents. 29 Furthermore, another study on adolescents with CF found that parental nagging was a strong predictor of psychological adjustment and suggested that clinicians need to monitor adolescents’ concerns regarding their parents’ care behavior and, where appropriate, offer mediation.21 On the other hand, as premature withdrawal of parental involvement may be associated with poor outcomes and adherence,15,16 it is important that the parents balance involvement and relinquishment. ...
... Research in adolescents with CF has presented the same picture. A more positive family relationship was found to associate with better adherence to airway clearance treatments and aerosolized medication,19 and a questionnaire survey found that family relationships including conflict have a significant impact on the young people’s psychological functioning and adjustment.20 Furthermore, nonsupportive behaviors from family members, particularly parental nagging, was found to predict psychological maladjustment.21 ...
When suffering from cystic fibrosis (CF), a number of problems may arise during adolescence; for example, poor adherence. The problems may be attributed to the adolescent being insufficiently prepared for adult life. Research on different ways of parenting adolescents with CF and the influence of different parenting styles on the adolescents' adherence to treatment is still limited.
The aim of this study was to identify the types of parental support that adolescents and young adults with CF want and find helpful in terms of preparing them for adult life.
Sixteen Danish adolescents with CF, aged 14-25, participated in the study. Two focus group interviews were carried out, one for 14-18-year-olds and one for 19-25-year-olds. Individual interviews were conducted, with three subjects. Using interpretive description strategy, a secondary analysis of the interview data was conducted.
The adolescents and young adults wanted their parents educated about the adolescent experience. They wanted their parents to learn a pedagogical parenting style, to learn to trust them, and to learn to gradually transfer responsibility for their medical treatment. Additionally, the adolescents noted that meeting other parents may be beneficial for the parents.
The findings of this study suggest that adolescents and young adults with CF want their parents to be educated about how to handle adolescents with CF and thereby sufficiently prepare them for adult life.
... However, they may be better connected with their friends than other vulnerable groups by their use of technology and social media platforms. 8 They have also had experience of developing resilience in the face of medical problems. Their coping strategies have been assessed in other studies using tools such as the CF-specific 'Ways of coping' scale which shows that 'optimistic acceptance' and 'hopefulness' are key coping strategies, with less reliance on 'distraction' or 'avoidance'. ...
People with cystic fibrosis (CF) were advised to undertake 'shielding' at home during the COVID-19 pandemic to reduce their risk of infection. We studied the impact shielding had on their wellbeing, mental health (GAD-7 and PHQ-9 scores) and adherence to treatment. 63 (46%) of 137 people surveyed responded (19 anonymously; 44 gave their identity). Most (94%) adhered to shielding advice 'all the time/often' but many (76%) found this difficult with disruption of their routines, relationships and exercise habits. Treatment adherence rates were high and continued during COVID-19. Depression scores were low and remained stable. Clinically significant anxiety rates rose from 27% pre-COVID-19 to 54% during COVID-19 and seven patients requested a psychology consultation from this study. There is a need to monitor the wellbeing of people with CF during the ongoing COVID-19 pandemic.
... Limited research has focused on the role of peers for younger children (<12 years old) with CF 90 . What is known is that peers provide companionship as well as tangible and emotional and relational support to youth with CF 91,92 . The amount of illness-specific support may be impacted by the youths' comfort with disclosure 55,91 . ...
Attention should be given to individual and family wellbeing from a child's first interaction with the medical team and continuing throughout development, especially for families who experience chronic illnesses, such as cystic fibrosis (CF). While much attention has been given to the mental health of people with CF 12 years and older, this paper explores various areas for CF teams to assess and provide additional resources during the first 12 years of a child's life to promote child and family wellness. In this paper, we discuss parental mental health, social determinants of health, adherence/self‐care, nutrition, attention to family lifestyle factors, engagement with school and peers, and modulator therapy for this age group of people with CF. This is the first of two companion papers which examines emotional wellness of children during the early years. The second paper examines mental health assessment and intervention for children under 12. Both encourage teams to strive to promote optimal child and family emotional health and wellness, emphasizing holistic health promotion and prevention, early identification, and intervention.
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... Perceived self-efficacy plays a central role in the process of self-management because it affects actions directly and through its impact on cognitive, motivational, and affective determinants. [6] It is a critical issue in adherence, [7] but few studies are addressed to CF. [1,2] An individualist approach should not neglect the social and environmental conditions of health behavior, [6] especially when family is heavily involved in the treatment; moreover, the social support -SS -has been shown to influence psychological adjustment of adolescents with CF. [8][9][10] The primary objective of this study is to describe attitude to self-management in Italian CF patients of different ages, from childhood to adult life, together with SS. ...
Increased survival of patients with cystic fibrosis (CF) has prompted interest toward coping with chronic disease. Self-efficacy, the confidence the people have to be able to perform a certain task, is considered crucial for selfmanagement of chronic diseases when the patient has to follow a demanding therapeutic approach.
Patients and Methods: It has been explored in 117 patients 7–39 years old, together with the social support, considered a relevant factor of coping as well. The constructs were assessed with self-report questionnaires and measured with a 0–100 score.
Results: The self-efficacy median score was lower in younger patients (61.1) and particularly in those with a BMI <10th, and higher in older ones (71.1); in these patients, self-efficacy was directly, significantly related with age at diagnosis. Older patients perceived a high social support from the family (91.7); it was inversely related to the time elapsed from diagnosis.
Conclusions: Coping with CF should be monitored from the age of diagnosis, possibly with psychological support
... This is particularly true for adolescents, who may choose not to disclose their diagnosis. They may forgo social events to do their treatments or may skip treatments to hide their illness from friends (21,22). Moreover, infection control guidelines prohibit all face-to-face contact with other individuals who have CF, which limits the unique type of support these peers provide given their shared experiences (23,24). ...
... Parents of children with CF face a number of increased responsibilities in caring for their children's well-being compared to parents of children without a chronic illness (Driscoll, Montag-Leifling, Acton, & Modi, 2009). The practical support given by parents can often continue into children's teen and young adult years with CF patients often transitioning away from the family home at a later age than peers without chronic illness (Graetz, Shute, & Sawyer, 2000;Hamlett, Murphy, Hayes, & Doershuk, 1996). Further individuals with CF can often find the transition from paediatric to adult care challenging and continue to seek support from their parents (Harris, Freeman, & Duke, 2011;Tuchman, Slap, & Britto, 2008). ...
This study examined predictors of the psychological adjustment of mothers of adolescents and young adults with CF. In our sample of 51 mothers (mean age 48 years) with at least one child with CF, aged between 16 and 25 years, high levels of anxiety and depression were found. Illness representations, in particular perceptions of the cyclical nature of CF and emotional representations of CF, were significantly associated with maternal psychological distress. Mother’s work status was also found to be related to psychological adjustment. Mothers who had employment outside of the home were found to experience less psychological distress than mothers who did not work outside of the home. These findings have clinical implications for mothers of older children and young adults with CF. Annual screening of parental psychological adjustment is recommended. Interventions using extensions of cognitive behavioural therapy approaches to address negative illness perceptions may also have some utility for this population. Future research would benefit from also examining the role of factors such as child’s clinical health status (e.g. BMI, frequency of hospitalisations) and treatment adherence, and financial implications of illness in predicting maternal distress.
... Specifically, it is possible that children with NF1 may have more contact with adults, such as through frequent encounters with medical professionals or attention from caretakers who routinely address these children's needs. Indeed, nurses and family caretakers have been cited as the most important source of support for youth with chronic illnesses, rather than same-aged friends (Graetz et al. 2000;Kyngas & Rissanen 2001). In addition, as discussed earlier, prior research suggests that children with NF1 have difficulties forming friendships, have fewer friendships and are more frequently rejected by their peers (North et al. 1997;Johnson et al. 1999). ...
Background:
This study examined social functioning and facial expression recognition (FER) in children with neurofibromatosis type 1 (NF1) compared to typically developing peers. Specifically, the current research aimed to identify hypothesised relationships between neurocognitive ability, FER and social functioning.
Method:
Children, ages 8 to 16, with NF1 (n = 23) and typically developing peers (n = 23) were recruited during regularly scheduled clinic visits and through advertisements on an institutional clinical trials website, respectively. Participants completed a measure of FER, an abbreviated intelligence test and questionnaires regarding their quality of life and behavioural functioning. Parents were also asked to complete questionnaires regarding the social-emotional and cognitive functioning of their child.
Results:
As expected, there were significant differences between children with NF1 and typically developing peers across domains of social functioning and FER. Within the sample of children with NF1, there were no significant associations observed between cognitive measures, social functioning and facial recognition skills.
Conclusion:
Children with NF1 exhibited high rates of social impairment and weak FER skills compared to controls. The absence of associations between FER with cognitive and social variables, however, suggests something unique about this skill in children with NF1. Theoretical comparisons are made to children with autism spectrum disorders, as this condition may serve as a potentially useful model in better understanding FER in children with NF1.
... As adolescents become more autonomous, they spend less time with parents and more time with peers, who become more influential in their decision-making [8]. However, for adolescents with CF, this shift in time spent with parents versus peers may impede their disease management ( fig. 1) [37]. To facilitate their independence, young adolescents need successive approximations to complete their treatments on their own. ...
Currently, there are no consistent procedures for transitioning adolescents from paediatric to adult cystic fibrosis (CF) care, and little empirical evidence exists on the best practices for transition. Given increased survival among patients with CF, a more formalised transition process is necessary to ensure continuity of care across the lifespan. This chapter reviews current transition practices and makes specific recommendations for more gradual, developmentally appropriate procedures involving all members of the CF care team. To ensure successful transition, providers should be aware of the normative milestones of adolescence and emerging adulthood, and how CF disrupts youths' navigation of these milestones. Age-appropriate guidance should be given to adolescents and their families in gradual doses, beginning in early childhood and continuing until early adulthood. Importantly, the success of these recommendations depends on clear and active communication between paediatric and adult care teams, parents, and adolescents.
... Esteem support, sometimes referred to as identity or ego support, can be defined as a form of social support that is provided to enhance how recipients feel about themselves and their attributes, abilities, or accomplishments (Holmstrom & Burleson, in press). Historically, esteem support has often been treated as an aspect of emotional support (Dakof & Taylor, 1990;Graetz, Shute, & Sawyer, 2000). Thus, until recently, there has been little direct attention to the properties or outcomes of esteem support (Carels & Baucom, 1999;Holmstrom & Burleson, in press). ...
... Esteem support, sometimes referred to as identity or ego support, can be defined as a form of social support that is provided to enhance how recipients feel about themselves and their attributes, abilities, or accomplishments (Holmstrom & Burleson, in press). Historically, esteem support has often been treated as an aspect of emotional support (Dakof & Taylor, 1990;Graetz, Shute, & Sawyer, 2000). Thus, until recently, there has been little direct attention to the properties or outcomes of esteem support (Carels & Baucom, 1999;Holmstrom & Burleson, in press). ...
... Perceiving social support from friends with and without chronic illnesses is an important part of adolescents' support networks as they may share their emotions and feelings about their lives with peers. Previous research conducted on adolescents with cystic fibrosis found that family members provide more tangible support, but peers/friends provide more companionship support (Graetz et al. 2000). However, some youth with illnesses may turn to their peers with health conditions because they know how to cope and how it feels to have an illness (Kyngäs 2004). ...
Advancing adolescent medicine has resulted in increased survival rates for life-limiting health conditions that are now considered chronic conditions. Due to the increased rates of chronic illnesses, the broad outcomes of community-based programs for adolescents with these illnesses need to be examined. Therefore, the present study seeks to examine community-based, mentoring and peer-led programs that have a social support component to increase quality of life outcomes for adolescents with chronic illnesses. A comprehensive literature review was conducted to identify articles that included a social support component to increase quality of life outcomes for adolescents with chronic illnesses. Six articles were included in the narrative analysis. Programs were divided into two types of interventions: mentoring/coaching (n = 3) and peer-led interventions (n = 3). A summary of each study was developed and main themes from each intervention were identified by the research team. This review found six community-based peer-led and mentoring interventions that incorporated a social support component to improve the quality of life of adolescents with chronic illnesses. Critical components for a peer-led or mentoring intervention should include social support components such as health coaching and mentoring by peers or adults. Since the nature of chronic illnesses is lengthy in duration, social support research translated into practice may offer adolescents who have any of these illnesses a means to improve their psychosocial outcomes. The interventions outlined in this present review have yielded promising results. Recommendations for future studies are included.
... In two additional studies, researchers found that conflict increased during the adolescent as compared to preadolescent years. In a study of 35 youth between the ages of 11 and 18, Graetz, Shute, and Sawyer (2000) found that younger children rated their family's supportive behaviors more highly than older youth. In a study of 10-to 18-year-olds, Foster et al. (2001) found that parents reported increased difficulty and conflict trying to enforce treatment as their children grew older. ...
Although parents and children must adhere to five primary treatments for cystic fibrosis (CF), and their roles transition over time, the scope of CF studies often has been limited to one treatment regimen or to children within a specified age range. The purpose of this mixed research synthesis study is to integrate findings from qualitative and quantitative studies addressing the transition of CF management from parent to child, as well as factors related to adherence across treatments and over time. An existing grounded theory was used as a framework to synthesize findings in 17 reports from 16 studies. The results confirm the theory and posit 3 additional factors that may influence parent-to-child transition of care management.
... Depending on characteristics of specific support situation, such as causes of stress, emotional support may be manifested as esteem support, which focuses on helping the target maintain or restore selfesteem or positive self-identity through verbal and/or nonverbal expressions of concern, affection, reassurance, and positive appraisal (Collins & Feeney, 2004;Cramer, 2003;Weisz & Wood, 2005;Wills, 1985). Therefore, in this study, emotional support is viewed as encompassing esteem support (Dakof & Taylor, 1990;Graetz, Shute, & Sawyer, 2000;Holmstrom & Burleson, 2011). ...
The current study assessed an integrated model of advice giving (Emotional supportProblem inquiry and analysisAdvice) with 572 participants from United States and 540 participants from mainland China. Participants read and responded to a hypothetical scenario in which they received advice from a friend. Advice that was offered following the moves of emotional support and problem inquiry and analysis was judged by both American and Chinese participants to be higher in quality and was more likely to be implemented than advice that did not follow this sequential pattern. Compared to Chinese participants, American participants evaluated advice offered with emotional support or problem inquiry and analysis as higher in quality. Participants with a higher independent self-construal also rated advice offered in conjunction with emotional support or problem inquiry and analysis as higher in quality than participants with a lower independent self-construal.
... Diagnosis is recognised as a particular point of vulnerability [54,56]. Graetz et al. [20] note the range of new familial adjustment tasks post-diagnosis, whilst others [51] go further in identifying diagnosis, the commencement of treatment, transition from hospital to home and relapse as all being potential points of elevated stress, even in families who are otherwise coping well, which is the majority of families [50]. ...
Families of children with congenital heart disease (CHD) cope differently depending on individual and familial factors beyond the severity of the child's condition. Recent research has shifted from an emphasis on the psychopathology of family functioning to a focus on the resilience of families in coping with the challenges presented by a young child's condition. The increasing number of studies on the relationship between psychological adaptation, parental coping and parenting practices and quality of life in families of children with CHD necessitates an in-depth re-exploration. The present study reviews published literature in this area over the past 25 years to generate evidence to inform clinical practice, particularly to better target parent and family interventions designed to enhance family coping. Twenty-five studies were selected for inclusion, using the PRISMA guidelines. Thematic analysis identified a number of themes including psychological distress and well-being, gender differences in parental coping, and variable parenting practices and a number of subthemes. There is general agreement in the literature that families who have fewer psychosocial resources and lower levels of support may be at risk of higher psychological distress and lower well-being over time, for both parent and the child. Moreover, familial factors such as cohesiveness and adaptive parental coping strategies are necessary for successful parental adaptation to CHD in their child. The experiences, needs and ways of coping in families of children with CHD are diverse and multi-faceted. A holistic approach to early psychosocial intervention should target improved adaptive coping and enhanced productive parenting practices in this population. This should lay a strong foundation for these families to successfully cope with future uncertainties and challenges at various phases in the trajectory of the child's condition.
... In Graetz's and his colleagues view, the supportive manner of family members differs from friends. The family supports concentrate on different aspects of adolescent's daily life but friend's supports focus on cooperation of experiences related to growth (24) . Another field of discussion in this research is interaction with opposite sex. ...
BACKGROUND: In countries like Iran in that most of the population consists of young people, designing and implementing comprehensive health programs targeted at young people must become a priority in national programs. More than half of high school students in Isfahan are female. Because of their more vulnerability, and their role in health of future generations, it is essential for health community to be aware of what they are experiencing about their health needs, and based on this awareness, designing and implementing accurate programs should be done in order to improve their health. This study was carried out with the aim to describe experienced health needs of female high school students.
... Most young people with chronic conditions describe the relationship within their family as good, although their parents tend to overprotect them* 62 . Adolescents with cystic fibrosis reveal that family members provide tangible support** 63 . While some studies found no differences in family functioning** 60 , others indicate that family interaction may be lower in chronically ill young people than among healthy controls** 64 . ...
... From our sample , it was evident that parental input was still desired or required in some cases. There was no evidence of young people not wishing to have parental support, supporting previous findings from physical health care literature that parents are still needed by their children in adult health services [29,30]. Some cases even suggested that they would not be willing to attend services without their parents present. ...
Background
There is little research on the process of transition between child and adolescent mental health services (CAMHS) and adult mental health services (AMHS). More recently, there is growing recognition that Attention Deficit/Hyperactivity Disorder (ADHD) may persist into adulthood requiring services beyond age 18. However, despite National Institute for Health and Clinical Excellence (NICE) Guidance which recommends specialist services for adults with ADHD, there is currently a lack of such services in the UK. The aim of the current study is to explore the experiences of young people with ADHD during transition from CAMHS to AMHS.
Method
Semi-structured qualitative interviews with ADHD patients accessing CAMHS clinics in Nottinghamshire were analysed using thematic analysis.
Results
Ten semi-structured interviews were transcribed and analysed. We found that patients’ relationships with their clinician were a key factor in both their reported experience of CAMHS and the transition process. Perceived responsibility of care was also pivotal in how the transition process was viewed. Nature and severity of problems and patients expectations of adult services were also contributing factors in the transition process. The need for continued parental support was openly accepted and thought to be required by the majority of young people with ADHD during transition.
Conclusions
Timely preparation, joint working, good clinician relationships and parental support serve to facilitate the process of transition for young people with ADHD. Nature and severity of problems are perceived to impede or facilitate transition, with predominantly more ‘complex presentations’ with associated mental health problems more familiar to AMHS (e.g. self-harm, depression) making for smoother transitions to adult services. Transitions to AMHS were more difficult when ADHD was viewed as the main or sole clinical problem. Further exploration of young people’s experiences of transition and their engagement with and experience of adult services is required to provide an overall picture of facilitators to successful transition and integration into adult services.
... Perceived social support has been found to be positively related to emotional adjustment, life satisfaction, and physical and mental health in healthy children (Reid, Landesman, Treder, & Jaccard, 1989). Conversely, a lack of social support or the presence of nonsupportive behaviors has been linked to illness and disease progression, as well as difficulties with general psychological adjustment in children and adults with chronic medical conditions (Graetz, Shute, & Sawyer, 2000;Nunes, Raymond, Nicholas, Leauner, & Webster, 1995). In children with pediatric obesity, greater levels of perceived social support has been found to be associated with higher quality of life, as well as with lower depressive symptoms (Zeller & Modi, 2006). ...
This study examined whether social support moderates the relation between peer victimization and depressive symptoms in children who are obese. Participants were 96 children 8 to 17 years of age (M = 12.8, SD = 1.8) attending a pediatric obesity clinic. Children completed self-report measures. Results indicated that for obese girls peer social support significantly moderated the association between peer victimization and depression, but this result was not found for obese boys. Partial support was found that peer social support buffered the relation between peer victimization and depressive symptoms in obese children. However, important gender differences were found.
... Adolescents with CF reported more problems in their family relationships, particularly frequent problems in the parentteen relationship, which was associated with more psychological problems in the child with CF (DiGirolamo et al., 1997). Having nonsupportive family members was negatively related to adolescent psychological adjustment (Graetz, Shute, & Sawyer, 2000). ...
This critical review of the literature on cystic fibrosis (CF) emerged as the result of the work of a national group that was convened to understand and advance the state of research on families and chronic illness. Several family scientists reviewed empirical studies regarding families and specific chronic diseases affecting children, adults, and the elderly. The authors report the substantive empirical findings regarding families who have children with CF. A total of 54 studies, published in the last 2 decades, are reviewed and critiqued. Strengths and limitations of these studies are discussed as well as conclusions and implications for theory and research in the area of families and childhood chronic illness. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
... This is especially so when condition-specific issues need to be addressed, and instruments may have to be modified or specially devised. For example, for one study, we found no instrument to measure perceived family and peer support for the various aspects of adolescents' management of their cystic fibrosis, and had to modify one previously developed for diabetes (Graetz, Shute & Sawyer, 2000). Another example is that, in attempting to devise a child report questionnaire for measuring coping with chronic illness, Spirito found difficulty in obtaining reliable measures, and argued that an interview format might work better (Spirito, 1996). ...
Paediatric research and practice often centre upon adult perspectives rather than those of children and adolescents themselves. This paper argues for a need to explore children's own views of living with a chronic condition, an approach consonant with a view of children as active copers and construers of their experiences rather than victims and passive health care recipients. It also accords with social ecological and systemic approaches to illness, and with multi-informant approaches to clinical child psychology. The value of multiple methods and their implications for gaining information from children are discussed. The quantitative methods typically employed in paediatric psychology research have an important place, though care must be taken in choice of instruments, as those devised for healthy children may unfairly pathologise those with chronic conditions or overlook issues important for them. The value of qualitative methods is also increasingly recognised in this field, not only because of their usefulness in exploring little-understood phenomena and rare conditions, but because of an increasing desire to understand the lived experiences of children and adolescents. Finally, case studies have an important role, especially as we begin attempts to convert research findings into clinical practice. Asking the children can both complement and challenge the perspectives of the adults charged with their care.
... Previous research on social support in CF, while limited, has suggested that family and friends provide qualitatively different types of support (Graetz et al. 2000;Foster et al. 2001). Graetz and colleagues (2000) conducted semi-structured interviews with 35 Australian adolescents with CF to identify behaviours provided by family and friends and perceived as supportive or non-supportive. ...
Successful management of a complex disease, such as cystic fibrosis (CF), requires support from family and friends; however, few studies have examined social support in adolescents with CF.
Twenty-four adolescents were interviewed about the support they receive from family and friends. Interviews were transcribed, coded and analysed to determine the types, frequency and perceived supportiveness of specific behaviours.
Both family and friends provided treatment-related support to adolescents with CF. Family provided more tangible support and friends provided more relational support. Adolescents also reported that the manner, timing and context of support behaviours influenced their perceptions of the behaviours' supportiveness. A subset of adolescents (17%) chose not to disclose their diagnosis to their friends.
The provision of support appears to be distinct from adolescent's perception of support and there may be some behaviours, such as treatment reminders, that are important to disease management but viewed as less supportive by adolescents. Facilitating increased social support holds the promise of improving disease management during adolescents, but more work is need to understand which aspects of support are related to management outcomes.
... O apoio social dos amigos está diretamente ligado à presença de enfermidades ou uma deficiência física. Adolescentes com diabetes relataram receber maior apoio emocional dos amigos (Bearman & La-Greca, 2002), o que também ocorreu nos casos de fibrose cística, cabendo aos familiares fornecer mais o apoio concreto ou instrumental (Graetz, Shute & Sawyer, 2000). ...
The research aimed at investigating foci of activity which were perceived by adolescents as relevant for establishing and maintaining friendships. The participants were 24 adolescents aged 14-17 years old from Vitoria, Brazil, all high school students. Twelve students were from a public school and 12 from a private school, including 12 females and 12 males. The results are presented in seven items: (1) friends network; (2) origin of friends; (3) friendship, physical space and neighborhood; (4) general activities; (5) specific activities; (6) communication and (7) friendship and dating. It can be concluded that the foci of activity, as part of the social context in which friendships begin and develop, show similarities and differences between the two groups (students from public school and private school) that represent different segments or groups of the local society. The foci of activities also highlight the relevance of social, economic, geographic, religious and cultural factor to friendship in adolescence.
The study explored the understandings of young adults with congenital heart disease (CHD) having age range between 18-22 years and this study also investigated the coping behaviors. The Interpretative Phenomenological Analysis (IPA) was utilized in order to provide a detailed perception towards the experiences of the patients. Semi-structured interview was conducted with a voluntary sample of six participants who were diagnosed as CHD. The study highlighted Four main themes, such as loss of person identity and social distinctiveness, concerns about physical and future, negative emotions/thoughts, and adaptive and maladaptive coping behavior. Females experienced greater feeling of loss as compare to male, and were more concerned about the future occurrence of the disease, and they also stated severe adverse thoughts and emotions. Females sensed stress, and death anxiety; and the male was hopeful for the recovery. Adaptive coping style was applied by all the patients whether male or females. Afterward the recognition that preliminary managing styles were effective then they become optimistic and demanded for the family and peer support, they also applied social avoidance because they thought are incapable of social functioning. The research conducted in America or other western countries are found similar in result. Because they also applied care, support and treatment. Health care workers and therapists must realize the adverse psychosocial effects of young adults living with a heart disease and offer proper psychological and social support. Developments in care have upgraded the endurance and value of life for the young adults with CHD.
Purpose
Cystic fibrosis is a life-shortening genetic disease. It affects both patient and family with the nurse playing a key role in the monitoring process. This study sought to contribute to enhanced targeted health care to adolescents with cystic fibrosis and their parents by understanding the experiences of living with cystic fibrosis. Based on Afaf Meleis' Transitions Theory (1986) nurses identify the transition experienced by the study participants, thus contributing to the quality of nursing interventions.
Design and methods
Two qualitative research studies using data collected through semi-structured interviews were conducted. The Straussian Grounded Theory was applied. The snowball technique was used for recruitment, under the inclusion criteria: adolescents aged between 10 and 21 years; diagnosis of cystic fibrosis for more than one year; and parents of these adolescents. A final sample of 16 adolescents and 14 parents was obtained.
Results
Nursing therapeutic interventions acted as a facilitator of the health/illness transition process. Nurses' intervention areas were identified to empower adolescents and their parents with targeted knowledge and abilities to cope with problems. After diagnosis, parents assumed a new role-playing.
Conclusions
Adolescents with cystic fibrosis and their parents experience various transition phases. Nurses can better help identifying the onset, persistence and ending of harmful periods.
Practice implications
Adolescents with cystic fibrosis and their parents experience various transition phases. Nursing therapeutic interventions are cardinal to the health/illness transition.
Background
Systematic reviews of quantitative research on the effects of childhood epilepsy have established its association with higher levels of psychiatric diagnosis, externalising and internalising problems, lower health‐related quality of life, social competence and poorer academic achievements, compared to their peers. However, much less is known about young people's experiences of living with epilepsy and its impact on their development from their own perspectives.
Methods
Semi‐structured interviews were conducted with 15 young people aged between 13 and 16 years. Participants were recruited as part of a larger mixed‐methods study examining individual and family influences on outcomes for young people with epilepsy. These young people attended an epilepsy clinic in KK Women's and Children's Hospital, Singapore. The Framework approach to data management and analyses involved both inductive and deductive generation of themes.
Results
Findings from young people's interviews provided in‐depth descriptions of stressful circumstances encountered. Interconnectedness between severity of the impairment and its impact on key developmental tasks, such as independence, autonomy, and social development, were emphasised. Seizures and illness‐related demands disrupted their day‐to‐day functioning and challenged their abilities to meet these tasks. In addition to these impairment effects, young people's experiences of social exclusion were also affected by social and environmental factors, which act as systemic barriers to participation. In turn, this has an effect on their self‐esteem. Nevertheless, young people reported positive experiences, such as support from both family and friends, which served as protective factors against the stress of living with a chronic medical condition.
Conclusion
The demands of epilepsy affect various domains of young people's lives. In order to obtain a holistic understanding of young people's inclusion or exclusion to participation, it is necessary to consider ‘impairment effects', ‘barriers to doing' and ‘barriers to being'.
Currently, there is little research investigating how schools can support the mental health and social development of young people with cystic fibrosis (CF), given their heightened risk of mental illness. Few studies have examined the relationship between bullying and mental health in populations of children with CF. This study describes the peer bullying experiences of young people with CF, and examines associations between school bullying and the psychological well-being of these young people. A sequential mixed-methods approach was used to collect data from 26 young people with CF (10−16 years of age). These data were compared with large samples of healthy children. Following an online survey, 11 young people, through online focus groups, expanded on the survey findings, describing their experiences within the school environment. Young people with CF reported lower involvement in bullying victimization and perpetration relative to the comparison population. For older adolescents with CF, victimization was associated with less connectedness to school and less peer support, and more school loneliness, anxiety, and depression. Young people with CF reported they generally liked the school environment, and were happy with their friendships, whereas some older adolescents reported that bullying evoked anxiety and mood problems. Reported bullying was primarily verbal and targeted characteristics of their CF, including their coughing, noninvolvement in certain activities because of shortness of breath, use of medication, and being underweight (for boys only). The findings provide some recommendations for interventions to promote mental health and school engagement among young people with CF.
This paper introduces to school personnel some important issues with regard to chronic illness in children and adolescents. Current approaches to understanding the adaptation of young people to chronic illness are introduced, and the present state of knowledge about its psychosocial impact is outlined. Specific effects on education are then discussed, followed by a consideration of the role of school personnel, particularly guidance officers and school counsellors, in ensuring that the needs of students with chronic illnesses are appropriately met.
The primary care clinician can play an important role in enhancing the quality of life for the adolescent with chronic illness through developmentally appropriate, individualized and compassionate coordination of care (Sidebar 2). Special attention to the process of adolescence, family, and psychological issues are required for successful management. Transition of care to adult services should be planned carefully with a multidisciplinary team.
Currently, there are no consistent procedures for transitioning adolescents from paediatric to adult cystic fibrosis (CF) care, and little empirical evidence exists on the best practices for transition. Given increased survival among patients with CF, a more formalised transition process is necessary to ensure continuity of care across the lifespan. This chapter reviews current transition practices and makes specific recommendations for more gradual, developmentally appropriate procedures involving all members of the CF care team. To ensure successful transition, providers should be aware of the normative milestones of adolescence and emerging adulthood, and how CF disrupts youths’ navigation of these milestones. Age-appropriate guidance should be given to adolescents and their families in gradual doses, beginning in early childhood and continuing until early adulthood. Importantly, the success of these recommendations depends on clear and active communication between paediatric and adult care teams, parents, and adolescents.
Suffering from a chronic disease or disability (CDD) during adolescence can be a burden for both the adolescents and their parents. The aim of the present study is to assess how living with a CDD during adolescence, the quality of parent-adolescent relationship (PAR) and the adolescent's psychosocial development interact with each other.
Using the Swiss Multicenter Adolescent Survey on Health 2002 (SMASH02) database, we compared adolescents aged 16-20 years with a CDD (n = 760) with their healthy peers (n = 6493) on sociodemographics, adolescents' general and psychosocial health, interparental relationship and PAR.
Bivariate analyses showed that adolescents with a CDD had a poorer psychosocial health and a more difficult relationship with their parents. The log-linear model indirectly linked CDD and poor PAR through four variables: two of the adolescents' psychosocial health variables (suicide attempt and sensation seeking), the need for help regarding difficulties with parents and a highly educated mother that acted as a protective factor, allowing for a better parent-adolescent with a CDD relationship.
It is essential for health professionals taking care of adolescents with a CDD to distinguish between issues in relation with the CDD from other psychosocial difficulties, in order to help these adolescents and their parents deal with them appropriately and thus maintain a healthy PAR.
© 2015 John Wiley & Sons Ltd.
In the last two decades the life expectancy for individuals with Cystic Fibrosis (CF) has increased significantly. The limited research examining the psycho-social experiences of young adults with CF indicates that other young adults lack awareness and understanding of CF. Using the Illness Perception Questionnaire, perceptions of CF were examined in individuals with CF aged 16 to 25 and two groups of same aged peers: those who did, or did not, know someone with CF. ANOVA with pairwise comparisons revealed that individuals with CF perceived significantly fewer physical symptoms of illness and fewer emotional and practical consequences of CF than both groups of peers. Individuals with CF also perceived significantly more personal control and greater understanding of CF than peers without experience of CF. Implications for enhancing opportunities for social engagement and for the provision of social support for young people with CF are identified.
The successful evolution of paediatric liver transplantation means that increasing numbers of young people survive into adulthood. Non-adherence to medication regimens leading to liver dysfunction, graft loss and patient death are prevalent in this vulnerable group. Insight into young people's experiences of living with a liver transplant (LTx) is vital to improve outcomes and guide future work in this area. Through semi-structured interviews, this study explored the experiences of living with a LTx for 13 young people transplanted as children and adolescents. Interviews were analysed using Interpretative Phenomenological Analysis, revealing that young people felt different from their peers as a result of their LTx. Young people's perceptions of their scar, experiences of illness symptoms and taking medications acted as triggers of differences. This led to an ongoing struggle to be normal when faced with typical activities for young people and to attempts to take back control. Findings support the implementation of routine psychosocial screening to identify additional support needs and the development of a peer mentoring programme to allow young people to gain social support, thus reducing feelings of being different. It is hoped that such initiatives will have positive consequences for quality of life, self-management and adherence to medications.
The recently proposed cognitive-emotional theory of esteem support messages (CETESM) posits that sophisticated esteem support messages enhance state self-esteem by promoting cognitive reattribution and reappraisal of esteem-threatening situations and their effects on the self. To test this hypothesis, participants (N = 234) read a hypothetical situation in which they imagined they had experienced one of two esteem-threatening situations. They then read a conversation in which a helper offered high- or low-quality esteem support messages. Finally, participants completed measures of cognitive reattribution and reappraisal and state self-esteem. Results mostly supported the predicted mediational model, though one message feature failed to predict message ratings, and issues arose in assessing cognitive reattribution.
Background and objective:
Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children and adolescents with CF to direct care toward areas that patients regard as important.
Methods:
MEDLINE, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature were searched from inception to April 2013. We used thematic synthesis to analyze the findings.
Results:
Forty-three articles involving 729 participants aged from 4 to 21 years across 10 countries were included. We identified 6 themes: gaining resilience (accelerated maturity and taking responsibility, acceptance of prognosis, regaining control, redefining normality, social support), lifestyle restriction (limited independence, social isolation, falling behind, physical incapacity), resentment of chronic treatment (disempowerment in health management, unrelenting and exhausting therapy, inescapable illness), temporal limitations (taking risks, setting achievable goals, valuing time), emotional vulnerability (being a burden, heightened self-consciousness, financial strain, losing ground, overwhelmed by transition), and transplant expectations and uncertainty (confirmation of disease severity, consequential timeliness, hope and optimism).
Conclusions:
Adolescents and children with CF report a sense of vulnerability, loss of independence and opportunities, isolation, and disempowerment. This reinforces the importance of the current model of multidisciplinary patient-centered care that promotes shared decision-making, control and self-efficacy in treatment management, educational and vocational opportunities, and physical and social functioning, which can lead to optimal treatment, health, and quality of life outcomes.
This paper reports qualitative data from a multidisciplinary, multimethod Craniopharyngioma Child and Family Impact Study conducted at the Royal Children's Hospital, Melbourne. The study aimed to assess the psychosocial impact on children and their families of a childhood craniopharyngioma, a congenital nonhereditary brain tumour that is 'benign' by histology, but often locally invasive. The tion may result in significant morbidity and mortality due to location in the brain, which tends to precipitate multisystemic abnormalities either at the time of presentation, or in conjunction with treatment. The condition has a high survival rate with approximately 90 percent of children alive ten years after diagnosis and although the diagnosis and treatment of craniopharyngioma may result in severe physical and emotional burden for the child and family, there have been few studies to date on the psychosocial impact of this multifaceted condition. Interviews incorporating a purpose-designed Craniopharyngioma Symptom and Treatment Impact Scale were held with 13 families. Impacts on both the family and the children were identified as well as information about the child's coping capacity; parents' fear, uncertainty and trust; family managing and mastery; the experience of hospital; service use and illness specific support. Implications for social work practice are discussed.
The purpose of this study was to examine the safety, feasibility, acceptability, and preliminary efficacy of a cross-age peer mentoring program created to improve adherence and psychosocial outcomes for pediatric liver transplant recipients. Twenty-two participants were assigned to a "mentor now" or "mentor later" waitlist control group. Tacrolimus SD, a validated measure of adherence, was assessed for six months pre- and post-intervention for both groups. Self-report measures of self-management and HRQOL were completed at recruitment and three months after training. Participant report indicated the acceptability of the intervention. Clinically significant improvement in adherence was detected. No significant changes on the psychosocial outcome measures at follow-up were observed. This study demonstrated that an outpatient-based mentoring program is a safe, feasible, and acceptable option to incorporate within a pediatric liver transplant program with potential for promising application in other transplantation populations as well. These results also suggest that the program may have been associated with meaningful improvement in adherence, although further evaluation is warranted.
This is the first in-depth study of the social support satisfaction of Australian children, measured using the “My Family and Friends” interview (Reid, Landesman, Treder, & Jaccard, 1989). This, together with the Self-Perception Profile for Children (Harter, 1985), was administered to 70 Adelaide children aged 9–11. A main effect of support provider and an interaction between support type and provider were found. Self-esteem was predicted by both overall social support satisfaction and network size. The Australian children reported lower levels and different patterns of support in comparison with previously published data from the USA. Australian parents were perceived as less “generalist” in their support, giving particularly low levels of companionship support. Friends gave high levels of companionship support but low levels of all other types; this, as in the case of parents, makes Australian friends more “specialist” supporters than their US counterparts.
The diagnosis of a child with a single gene disorder can take on different meanings for different families. It is not uncommon
for some families to arrive at a pediatric genetics clinic after months or years of searching for an underlying reason for
their child’s symptoms. The fact that, through genetic testing, clinicians can put a name to the collection of differences
already noted in the child provides the family access to prognostic information, supportive resources, more accurate reproductive
risk counseling, and possible relief from the burden of uncertainty.
Cystic fibrosis (CF) is a multisystemic life-limiting genetic disorder, primarily affecting respiratory functioning. Most patients with CF are diagnosed by 2 years of age, and the current median predicted survival rate is 37.4 years old, with 95% of patients dying from complications related to pulmonary infection. Given the chronic, progressive, and disabling nature of CF, multiple treatments are prescribed, most on a daily basis. Thus, this illness requires children, with the aid of their families, to adopt multiple health-related behaviors in addition to managing more typical developmental demands. The morbidity and mortality factors pose cognitive, emotional, and behavioral challenges for many children with CF and their families. This article applies a developmental perspective to describing the psychosocial factors affecting psychological adjustment and health-related behaviors relevant to infants, preschool and school-age children, and adolescents with CF. Topics particularly pertinent to developmental periods and medical milestones are noted, with clinical implications highlighted.
This qualitative study explored the experience of parents and adolescents living with cystic fibrosis prior to the transfer of the adolescent's care from a pediatric to an adult health care facility. Semistructured interviews were conducted with seven families receiving care from a specialized cystic fibrosis clinic; parents and adolescents were interviewed separately, followed by a group interview with members of a health care team comprising eight professionals from the clinic. Interviews were analyzed through a systemic lens which accounts for interaction and reciprocity in relationships. The parents' experience was marked by suffering and uncertainty that remained unexpressed to the health care team, even though team members had known the family since the child was first diagnosed. Findings led to identifying a systemic hypothesis that accounted for the interactions and relational processes between parents and the health care team. This hypothesis may guide the development of systemic family nursing interventions that target this complex, relational, transition process.
Cystic fibrosis (CF) is a multisystemic life-limiting genetic disorder, primarily affecting respiratory functioning. Most patients with CF are diagnosed by 2 years of age, and the current median predicted survival rate is 37.4 years old, with 95% of patients dying from complications related to pulmonary infection. Given the chronic, progressive, and disabling nature of CF, multiple treatments are prescribed, most on a daily basis. Thus, this illness requires children, with the aid of their families, to adopt multiple health-related behaviors in addition to managing more typical developmental demands. The morbidity and mortality factors pose cognitive, emotional, and behavioral challenges for many children with CF and their families. This article applies a developmental perspective to describing the psychosocial factors affecting psychological adjustment and health-related behaviors relevant to infants, preschool and school-age children, and adolescents with CF. Topics particularly pertinent to developmental periods and medical milestones are noted, with clinical implications highlighted.
Adolescents constitute a significant proportion of pediatric transplant patients, whether they have survived a transplant in early childhood (like most heart and liver recipients) or are transplanted in older childhood or adolescence, such as many renal transplant recipients. Their needs can be significantly different from either children or adults, as they are undergoing a major transformation that involves making educational and vocational decisions and commitments, establishing a new and more equal relationship with their parents, discovering their sexual identity, taking increasing responsibility for their health and creating the moral, philosophic, and ethical perspective that they will carry through their lives. This article discusses adolescent issues in transplantation.
Treatment regimens for patients with cystic fibrosis (CF) are time-consuming and complex, resulting in consistently low adherence rates. To date, few studies have evaluated innovative technologies to improve adherence in this population. Current infection control guidelines for patients with CF seek to minimize patient-to-patient transmission of potential pathogens. Thus, interventions must avoid face-to-face contact and be delivered individually, limiting opportunities for peer support. This study aimed to develop and assess a web-enabled cell phone, CFFONE, designed to provide CF information and social support to improve adherence in adolescents with CF.
The acceptability, feasibility, and utility of CFFONE were evaluated with health care professionals (n = 17) adolescents with CF aged 11-18 years old (n = 12), adults with CF aged 21-36 years old (n = 6), parents of adolescents with CF (n = 12), and technology experts (n = 8). Adolescents also tested a prototype of CFFONE (n = 9). Qualitative and quantitative data were collected.
Focus group data with health care professionals indicated a need for this intervention, and indicated that CFFONE would be likely to improve knowledge and social support, and somewhat likely to improve adherence. Adolescent, adults, and parents all rated CFFONE as likely to improve adherence. Technology experts rated the prototype design and format as appropriate.
The current study provided some support from key stakeholders for this intervention to improve adherence in adolescents with CF. Next steps include a multi-center trial of the efficacy and safety of CFFONE.
The complex and arduous treatments required to maintain the health and prolong the life of patients with cystic fibrosis combine with other factors to create a climate within which the active following of prescribed medical treatment is often compromised. The authors' clinical experience and collection of descriptions of more than 1,200 critical incidents from 223 patients and members of their immediate families has led to the description of three basic typologies of nonadherence or noncompliance in the medical treatment of this illness. These are inadequate knowledge, psychosocial resistance, and educated nonadherence. Clinical use of this conceptual framework may enhance diagnostic and treatment efforts. Although the specific application described is concerned with cystic fibrosis, it seems reasonable to conclude that the same principles are applicable to other chronic illnesses of childhood.
The Diabetes Family Behavior Checklist (DFBC) was administered to 54 adults and 18 adolescents (less than 19 yr of age) with insulin-dependent diabetes mellitus (IDDM). Subjects and family members completed parallel forms of the DFBC at initial and 6-mo follow-up home interviews. During each of these periods, adherence was assessed via self-report, 1 wk of self-monitoring, and 24-h dietary recalls. The results showed reliable differences between adolescents and adults. More negative interactions with family members were reported by adolescents and their family members, and adolescents were in poorer metabolic control. For adults but not adolescents, negative DFBC scores were prospectively predictive of poorer regimen adherence over the 6-mo interval for measures of glucose testing, insulin injection, and dietary adherence. In addition, higher negative DFBC scores for adults were marginally associated with higher HbA1 levels (P less than 0.10). We conclude that the DFBC is a promising measure of family interaction related specifically to the IDDM regimen and that, for adults, higher levels of nonsupportive family behaviors may be related to reduced regimen adherence and poor control.
Diagnostic criteria for alcohol use disorders have largely been developed from research and clinical experience with adults. This research was designed to describe patterns of DSM-IV alcohol use disorder symptoms, and other problem domains, in adolescents with alcohol problems.
A modified version of the Structured Clinical Interview for the DSM (SCID) was used to assess DSM-IV alcohol abuse and alcohol dependence symptoms in 91 male and 90 female adolescent drinkers with various levels of alcohol consumption and alcohol-related problems. The SCID was expanded to assess other alcohol problem domains thought to be relevant for adolescents.
DSM-IV dependence symptoms showed moderate to high covariation, supporting the utility of the alcohol dependence construct in adolescence. Compared to previous reports from adult samples, some symptoms were relatively infrequent (e.g., withdrawal, medical problems). Tolerance had low specificity for the diagnosis of alcohol dependence. There was significant heterogeneity in the symptomatology of subjects with DSM-IV alcohol abuse. Although they are not in the DSM-IV criteria, alcohol-related blackouts, craving and risky sexual behavior were common in adolescents with DSM-IV alcohol dependence and abuse diagnoses.
The data generally support the utility of DSM-IV criteria for alcohol dependence among adolescents. However, tolerance, withdrawal and medical problems appear to present differently in adolescents than has been reported in adults. Those with DSM-IV alcohol abuse diagnoses had very heterogeneous patterns of symptomatology, suggesting limitations of the criteria for DSM-IV alcohol abuse in adolescence. Alcohol-related blackouts, craving and risky sexual behavior are common among adolescents with alcohol use disorders and are an important focus for assessment and treatment efforts.
For most people, social relationships undoubtedly function more often as assets than as liabilities. Yet social relationships clearly can be a source of stress as well as support and companionship, and evidence suggests that negative social exchanges have potent effects on psychological well-being. To achieve a more comprehensive understanding of how social bonds affect emotional and physical health, greater attention is needed to the problematic exchanges that occur within informal social networks. Researchers interested in the negative aspects of social relationships face many of the same conceptual and methodological issues that have challenged social support researchers. This paper examines several of these parallel issues, highlighting important gaps in our existing knowledge base regarding the manner in which negative interpersonal transactions affect well being.
Objective:
To measure the prevalence of human immunodeficiency virus (HIV) infection and high-risk behaviors among heterosexuals in alcohol treatment.
Design:
Cross-sectional survey.
Setting:
Five public alcohol treatment centers.
Subjects:
Consecutive sample of 888 heterosexual clients entering treatment between October 1990 and December 1991. Respondents were 51% black, 10% Hispanic, 33% white, and 76% male. The overall response rate was 68%.
Measurements:
Structured interview and serotesting for HIV antibodies.
Results:
The overall seroprevalence of HIV infection was 5% (95% confidence interval, 3% to 6%). There were no significant differences in rates of infection by age, gender, or race. The prevalence of infection in heterosexual respondents without a history of injection drug use was 3% in men and 4% in women, several times higher than published estimates from a similar community-based heterosexual sample. Unsafe sexual practices were common: 54% of respondents reported multiple sexual partners in the previous year, 97% of nonmonogamous respondents did not use condoms during all sexual encounters, and few respondents consistently asked new sexual partners about previous high-risk behaviors.
Conclusions:
There is a substantial prevalence of HIV infection among heterosexual clients in San Francisco (Calif) alcohol treatment programs, much of which is not associated with injection drug use. Because of this and the high prevalence of unsafe sexual behaviors, there is a relatively high likelihood of heterosexual spread of HIV among the large population of clients seeking treatment for alcohol dependency. Interventions to prevent HIV spread should become a standard part of alcohol treatment programs.
Twenty-six adolescents with cystic fibrosis (CF) were administered the Tennessee Self Concept Scale. The mean overall scores placed the CF patients at the 30th percentile of a normative adolescent population. Eighty-five percent were at appropriate school grade level, 69% participated in physical education classes, and 81% had future plans for college and/or a career. Total Life Event scores of CF adolescents were not significantly different from the normal adolescent population. However, in 22 CF adolescents evaluated with a modified National Institute of Health Scoring System, negative Life Event scores were higher in 10 adolescents with moderate to severely impaired health status than in 12 with lesser impairment. This relationship was not modified by other psychosocial variables.
Current understanding of the risk factors related to adolescent initiation of sexual activity, use of contraception, pregnancy, and STDs is examined. From recent research on adolescent fertility, findings that have particular relevance to school health or reflect new understandings of adolescent sexuality are summarized. In selected cases, prevention programs that build directly on an understanding of these risk factors are cited.
PIP
It is important to understand the risk factors related to adolescent initiation of sexual activity, use of contraception, pregnancy, and sexually transmitted diseases (STD). This understanding is important in identifying and caring for youths at risk and designing primary and secondary prevention programs for schools and communities. The current understanding of these risk factors and recent findings are summarized in this paper. Intermediate determinants of fertility are broadly discussed with closer attention given to specific biopsychosocial risk factors affecting fertility and the potential for contracting STDs. The roles of demographics, geography, poverty and ethnicity, religion, school performance, family factors, peer influences, puberty, risk-taking behavior, drugs, sexual abuse, self-esteem and psychological variables, school health education, and school-based clinics are considered. The social determinants of contraceptive use/STD protection, pregnancy continuation or abortion, and STDs are also discussed.
In August 1988, 1,773 Massachusetts 16-19-year-olds were surveyed by telephone using anonymous random digit dialing; response rate 82 percent. Logistic regression tested whether alcohol and drug use, perceived susceptibility to human immunodeficiency virus (HIV), severity of HIV if infected, effectiveness of condoms in preventing infection, barriers to condom use, and behavioral cues such as exposure to media or personal communication about acquired immunodeficiency syndrome (AIDS) were independently related to condom use. Among sexually active respondents, (61 percent of those interviewed) 31 percent reported always using condoms. Respondents who believed condoms are effective in preventing HIV transmission and worried they can get AIDS were 3.1 and 1.8 times, respectively, more likely to use condoms all the time. Respondents who carried condoms and who had discussed AIDS with a physician were 2.7 and 1.7 times, respectively, more likely to use them. Those who believed condoms do not reduce sexual pleasure and would not be embarrassed if asked to use them were 3.1 and 2.4 times, respectively, more likely to use condoms. Teens who averaged five or more drinks daily or used marijuana in the previous month were 2.8 and 1.9 times, respectively, less likely to use condoms. Among respondents who drink and use drugs, 16 percent used condoms less often after drinking and 25 percent after drug use. Those counseling adolescents about HIV should assess and discuss beliefs outlined in the Health Belief Model, as well as their alcohol and drug use.
The relationship between social support and adjustment was investigated in children with a chronic physical illness or handicap. Mothers of 153 children with juvenile diabetes, juvenile rheumatoid arthritis, chronic obesity, spina bifida, or cerebral palsy reported on these children's family support, peer support, externalizing behavior problems, and internalizing behavior problems. Children reported as having high social support from both family and peers showed a significantly better adjustment than those with high social support from only one of these sources. Chronically ill or physically handicapped children without high support from both family and peers were reported to have significantly more behavior problems than children in general. Both family and peer support contributed negatively and independently to the variance in externalizing behavior problems, whereas only peer support did so for internalizing behavior problems. There were no interactions between type of support and either sex or age in predicting adjustment.
A total of 51 (34 men and 17 women) heterosexual alcoholic inpatients were assessed with respect to their engagement in high-risk behaviors for HIV infection and AIDS. Results indicated that a subset of the subjects engaged in frequent and diverse high-risk sexual activities, often had several different sexual partners over a 6-month period, frequently used drugs during sexual activities and sometimes used drugs intravenously. The frequency of high risk behaviors was similar for men and women, but minority subjects engaged in higher levels of high-risk behaviors than did whites. Both age and educational level were inversely related to behavioral risk for HIV infection. Although the current findings are limited due to sample size and representativeness, the results indicate that future research needs to focus on high-risk behaviors for HIV infection among alcoholics, with more attention directed toward prevention and intervention strategies.
This article reviews the literature pertaining to the psychosocial adaptation of adolescents with cystic fibrosis. This chronic debilitating illness is exceptionally stressful to the patient and his or her family. It may result in significant individual and family psychopathology, yet social adaptation is reported to be remarkably good. Mediating variables in adaptation are reviewed, with special emphasis on family function variables. Directions for current interventions and future research are suggested. An expanded role for psychologic intervention with individual patients and their families is recommended.
Although evidence suggests that adolescents with chronic illness are at a greater risk for psychosocial disability, little is known about the adolescent's perception of the impact of the disease on his or her day-to-day life. Standardized measures of coping strategies, mastery, self-efficacy, social support, depression, and a semistructured interview on everyday difficulties were administered to matched groups (sex and age) of 31 adolescents with cystic fibrosis, 31 adolescents with diabetes, and 31 healthy controls. No differences were found between control and adolescents with a chronic disease responses on the standardized measures. The semistructured interview, however, revealed that the adolescent's perception of his or her physical health and the reaction of other family members to the illness were important sources of stress. These findings suggest that, in general, adolescents with a chronic illness cope effectively with their disability but that parents and clinicians must be sensitive to the adolescents' feelings and concerns regarding their health and its impact on the family.
The 79 female and 147 male patients constituting the population with cystic fibrosis (CF) aged 16 years and older attending The Hospital for Sick Children were asked to complete the Cornell Medical Index (CMI) and Tennessee Self-Concept Scale (TSCS); 64 female (81%) and 112 male (76%) subjects participated. Analysis of CMI results showed 43% of female subjects to have moderate to severe emotional disturbance compared to 19% of male subjects. This female : male ratio for severity of emotional disturbance is found in ostensibly healthy groups, but the percentages of disturbance approach values for medical patient populations. The frequency of emotional disability is greater in those more than 20 than in those 16-19 years old. The TSCS results portray a generally normal self-concept except for scores of positive physical self and psychosis for patients aged 20 years and older; these scores approach psychiatric values, suggesting that some reality distortion facilitates emotional adjustment to adult life with CF. The TSCS and CMI results correlate significantly, indicating a connection between self-concept and emotional status. However, TSCS and CMI scores do not correlate with measures of disease severity except for correlations between lung function and physical self-concept in older male patients. These results suggest that psychologic functioning is independent of the degree of physical impairment in older patients with CF, with the long-surviving male patients more realistically appraising the limitations their disease imposes and utilizing denial and minimization to a lesser degree. Demographic data on the clinic population reveal that most patients aged 16 years and older cope with their intellectual, developmental, and socioeconomic tasks commensurate with normal age expectations.
Although previous studies have reported behavioral correlates of sexually-transmitted diseases (STDs) and psychosocial correlates of risky behavior, research has not examined the linkages between psychosocial attributes, behavioral patterns, and actual STD acquisition within the same adolescent sample. We examined the effects of five psychosocial factors on risky sexual behavior and substance use, and their direct and indirect effects on STD acquisition.
A multiethnic sample of 571 sexually-active female adolescents (ages 13-19 years) was recruited from family planning clinics. Subjects completed questionnaires prior to their gynecologic examination and STD testing.
A multiethnic sample of 571 sexually-active female adolescents (ages 13-19 years) was recruited from family planning clinics. Subjects completed questionnaires prior to their gynecologic examination and STD testing.
Female adolescents who were heavy substance users, who felt little control over their sexual behavior, and had a greater number of friends who engaged in risky sexual behavior were themselves more likely to engage in risky sexual behavior. Risky sexual behavior was associated with positive STD status. Subjects who used psychoactive substances during sex reported higher numbers of sexual partners and were more likely to have an STD.
This research has identified possible causal paths by which psychosocial factors may influence specific behaviors that are predictive of STDs in adolescent females.
Evaluated and compared the support provided by family members and friends for adolescents' diabetes care. Family and friend
support also were examined in relation to other measures of social support, to demographic variables (age, gender, duration
of diabetes) and to adherence. Using a structured interview, 74 adolescents with diabetes described the ways that family members
and friends provided support for diabetes management (insulin shots, blood glucose monitoring, eating proper meals, exercise),
and for helping them to “feel good about their diabetes.” Families provided more support than friends for three management
tasks (insulin injections, blood glucose monitoring, meals); this support was largely instrumental. In contrast, friends provided
more emotional support for diabetes than families. Greater family support was related to younger age, shorter disease duration,
and better treatment adherence. Implications of the findings include encouraging parents to remain involved in adolescents'
treatment management, and involving peers as supportive companions for meals and exercise.
Data from 17,857 patients with cystic fibrosis submitted in 1990 to the registry maintained by the Cystic Fibrosis Foundation were used to described their demographic characteristics, survival rates, pulmonary function, anthropometry, microbiologic data, complication rates, and health care utilization. Comparisons with similar data collected in 1969, 1972, and 1978 demonstrated a significant shift in the age distribution of patients with cystic fibrosis. The proportion of adult patients increased fourfold between 1969 (8%) and 1990 (33%). In 1990 the median age of all patients in the cystic fibrosis registry was 12.5 years; the median age at diagnosis was 7 months; cystic fibrosis was diagnosed in 90% of all patients by age 12 years. Meconium ileus at birth was reported for 16% of all patients with a new diagnosis in 1990. Median survival age doubled between 1969 and 1990, from 14 to 28 years. Female patients consistently had a lower median survival age than male patients (25 vs 30 years in 1990). The most frequently reported respiratory pathogen was Pseudomonas aeruginosa, cultured in specimens from 61% of all patients, ranging from 21% of those less than 1 year of age to more than 80% of those aged 26 years or older. Overall, patients with cystic fibrosis are living much longer than in the past but still have chronic pulmonary infections and other medical complications related to their disease, including diabetes, intestinal obstruction, cirrhosis, hemoptysis, and pneumothorax.
The human immunodeficiency virus (HIV) infection rate was examined in a selected cohort of healthy clients of an inner-city alcohol treatment center from 1990 through 1993. These subjects were also participating in a research protocol (n = 258) designed to assess immunity and HIV risk behaviors in inner city alcohol-dependent persons. Healthy alcohol-abusing heterosexual clients (165) had HIV testing conducted in an inner-city ambulatory alcohol treatment center between September 1990 and December 1993. Respondents were 93.9% African-American and 3.6% Hispanic; 72.1% were male. Anonymous HIV-1 antibody testing was conducted retrospectively for an additional 80 subjects who participated in the research protocol during the same interval, but for whom HIV-1 antibody testing was not conducted clinically at the time. HIV infection rate among the clinic-tested subjects (n = 165) was 4.4% for individuals who were exclusively alcohol-dependent, 1.4% for non-injecting drug use (IDU) mixed substance abusers, and 46.8% for clients with a history of IDU. Rates did not differ among cohorts tested in different years. Among non-injecting drug users tested in the clinic, all infected respondents (n = 3) were women (p = 0.03). Among those tested anonymously (n = 80), however, infection rate for exclusively alcohol-dependent persons was 16.7%, non-IDU mixed abusers 11.1%, and injecting drug users 48.3%, with seropositive males as well as females in each group. HIV infection rates for the pooled samples (n = 245) were 8.7% for exclusively alcohol-dependent persons, 5.1% for mixed abusers, and 54.5% for injecting drug users. Among non-injecting drug users, exclusively alcohol-dependent women had a significantly higher (p < 0.01) infection rate (20.0%) than the remaining females and males. Infection rates among exclusively alcohol-dependent males, male and female polysubstance non-IDU abusers, and injecting drug users were comparable with that seen in an earlier screening in the same clinic in 1989, with apparently little diffusion of infection from the IDU population to other substance abusers. An exception seemed to be exclusively alcohol-dependent females, who show substantially elevated rates. Age, housing, and other social differences may help segregated substance-abusing populations in the relatively small Newark metropolitan area, although not protecting exclusively alcohol-dependent females.
The purpose of this study is to document associations among problem behaviors in childhood and early adolescence and several health risk behaviors in middle adolescence, including a cumulative index of sexual intercourse risk.
A nontreatment sample of 1167 10th and 11th grade students was recruited from three homogeneous suburban high schools in western New York. Intercourse activity and number of sexual partners were assessed four times at 6-month intervals over a 2-year period via self-report questionnaires administered in classroom settings.
Sexual intercourse activity, once initiated, was found to be relatively persistent, rather than sporadic, for most adolescents. Repeated intercourse experience with multiple partners over the assessed time periods was associated with higher levels of externalizing childhood behavior problems, earlier onset of antisocial behaviors and substance use, and higher concurrent substance use. An avoidant, withdrawn behavioral style in childhood was associated with lower rates of sexual involvement in adolescence.
Temporal linkages among childhood precursors and adolescent sexual behaviors were identified as critical to understanding adolescent risk behaviors. These cross-time relationships may identify potential targets for future intervention/prevention efforts among high risk subsamples of children and adolescents.
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I get by with a little help from my family and friends
- La Greca
Growing older with cystic fibrosis
- Cowen
The psychosocial adaptation of adolescents with cystic fibrosis
- Mador
Chronic disease and its impact
- Cappelli
Supportive and nonsupportive family behaviors
- Schafer