An evaluation of a community youth befriending programme for young people with cystic fibrosis and their carers in Lothian (original) (raw)
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Journal of Clinical Nursing, 2010
Aim. To evaluate the impact of a community youth befriending programme on a group of young people with chronic illness and their carers.Background. Befriending is said to be highly valued by those who are befriended, improving self‐esteem and offering opportunities for increasing skills and social activities.Design. A qualitative longitudinal pilot study of young people with cystic fibrosis, their carers, their befrienders and other personnel, closely involved with the families.Methods. Seventeen participants were interviewed over one‐year to explore their experiences of befriending. Ten of these were either befriendees (aged 8–18 years) or their parents. Half of these families were interviewed twice; once at the beginning of the befriending relationship and another at one year later. Seven other personnel, closely involved with the young people, were interviewed; two play therapists and two education liaison personnel. A focus group was also held with three befrienders. This ra...
Supporting cystic fibrosis disease management during adolescence: the role of family and friends
Child: Care, Health and Development, 2012
Background 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. Methods 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. Results 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. Conclusions 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.
Friendship Quality and Health-Related Outcomes Among Adolescents With Cystic Fibrosis
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 ¼ 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.
Health & social care in the community, 2009
The majority of those diagnosed with cystic fibrosis now live to adulthood. 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. The aim of this study was to examine how young people and staff perceive the nature of parental care and support for those with cystic fibrosis who have left paediatric services. As part of a larger study of transitional care, semi-structured interviews were conducted with 50 young people aged 13-24 years with cystic fibrosis and 23 specialist healthcare professionals across 2 cystic fibrosis centres in southeast England. Four domains of perceived parental support were identified by the young people interviewed: providing non-clinical practical and emotional support; acting as ‘troubleshooters’ in times of health-related crisis; working in partnership with offspring in ongoing disease management in the home and clinic; and 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. The article concludes by suggesting that there is a need to search for appropriate practical ways of continuing to include parents in young people’s care in adult services, while ensuring that the privacy and confidentiality of the patient are maintained.
Parenting adolescents with cystic fibrosis: the adolescents’ and young adults’ perspectives
Patient Preference and Adherence, 2011
Background: 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. Aim: 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. Methods: 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. Results: 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. Conclusion: 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.
Adolescents’ experiences of isolation in cystic fibrosis
Clinical Practice in Pediatric Psychology, 2018
Background Cystic Fibrosis (CF) infectious isolation guidelines and clinical recommendations exist in standards of CF care to reduce the risk of cross-infection between individuals with CF. Chronic infection is associated with deterioration in lung function and increased rates of morbidity and mortality, thus preventing and reducing cross-infection is a concern for individuals with CF. Understanding the bio-psychosocial implications of isolation is vital to developing and providing holistic approaches to CF care. This study aimed to make sense of how adolescents with CF understand and experience infectious isolation during their care. Method Qualitative, semi-structured interviews were conducted with nine adolescents, aged 12-19 years-old, with a diagnosis of CF who had experienced isolation. Interviews were analyzed using inductive thematic analysis. ADOLESCENTS' EXPERIENCES OF ISOLATION IN CYSTIC FIBROSIS 2 Results Participants experienced difficulty adjusting to living with isolation and attempted to integrate their isolation experiences. Isolation highlighted a sense of threat posed by crossinfection, a threat which participants experienced as originating from others and from themselves to others. Participants described striving to protect themselves and others from this threat. Isolation also appeared to exacerbate differences participants noticed between themselves and others without CF. Conclusion For adolescents with CF, isolation is not a neutral experience. Adolescents reported difficulty understanding isolation and challenges associated with this experience across settings. Given these difficulties, multidisciplinary teams should increase awareness, understanding and discussion about the psychosocial impact of isolation amongst those with CF, their families and wider systems, to promote optimal bio-psychosocial outcomes. Future research could explore experiences of isolation from children, family and staff perspectives.
Psycho-Social Aspects in Children with Cystic Fibrosis
Revista De Cercetare Si Interventie Sociala, 2015
Cystic fibrosis (CF) is a multisystemic genetic disorder affecting 1:2500 newborns. Its prognosis has changed in the last two decades with increasing life expectancy. Nevertheless, this disease can impact the psychosocial development. Children with CF and their caregivers may experience different significant stressors that can lead to poor adaptation, increase depressive and anxious symptoms and decreased quality of life. Psycho-social interventions are concerned with adherence to treatment, emotional and social adaptation and health-related quality of life. Although the life expectancy increased, it is important to assure a better quality of life. The authors present the psychiatric and the psychosocial aspects of CF found at children with cystic fibrosis and their caregivers. They conclude that precocious identification and effective treatment of depressive and anxious symptoms could improve the patient’s daily functioning and the disease management.
Health expectations : an international journal of public participation in health care and health policy, 2015
Background There is increasing recognition of the Internet's potential role in providing information and support for people living with long-term conditions. However, how young people and parents use online forms of self-care support in the context of living with childhood chronic illness has been under-researched. Objective To explore how online peer support is used by young people and parents to support self-care in relation to cystic fibrosis (CF). Setting and participants Online forum for young people and parents based on a CF charity website. A total of 279 individuals participated in the forum during the study. Design An online ethnographical approach, involving observing, downloading and analysing discussion group postings. All postings made over a random 4-month period were included (151 discussion threads). Results The online setting enabled a physically disconnected group to connect and create a safe space to collectively share experiences and receive support to manage and live with cystic fibrosis. Participants exchanged experientially derived advice and views on how to manage treatments, emotions, relationships, identity and support from services. While parents sought information and support on managing specific therapies/services and ways of maintaining their child's health, the information and support young people desired appeared to be more directed at how to 'fit' CF into their everyday lives. Discussion and conclusions Online support groups appear to supplement professional support in relation to self-management. They enable young people and parents to share experiences, feelings and strategies for living with long-term conditions with peers and develop the expertise to empower them in interactions with healthcare professionals.
Children's experiences of cystic fibrosis: a systematic review of qualitative studies
Pediatrics, 2014
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. 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. 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 ...