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Living with cystic fibrosis - a qualitative study of a life coaching intervention.

ABSTRACT: Background:Cystic fibrosis (CF) is a chronic, life-shortening disease with a significant treatment burden. To support young adults with CF in their everyday life, we previously conducted a life coaching feasibility trial (published elsewhere). The aim of the current study was to explore how life coaching was experienced by study participants within the context of their lives with CF. Methods:A qualitative study using individual interviews. Respondents (n=14) were recruited from the intervention group after participation in life coaching. Data were analyzed from a phenomenologic-hermeneutical perspective, inspired by Ricoeur's theory. Findings:Periodic exacerbations of CF led to worry about disease progression, and interrupted the respondents' ability to fulfill daily life roles satisfactory. The treatment burden demanded self-discipline and this was sometimes at the expense of social life or career. The young adults rarely spoke to others about their situation; therefore, they valued opening up to a professional coach about life and concerns. We identified three themes: 1) living an unpredictable life; 2) the conflict between freedom and the constraints of illness; and 3) the value of telling one's story. In relation to all three themes, coaching promoted reflection over life situations, reframed thoughts, and facilitated finding new ways to manage everyday life. Conclusion:Life coaching is an intervention that is valued for those who feel challenged by their CF disease. Coaching programs should be designed to include the participants, when they feel a need for coaching and are open for change. Screening parameters to identify persons who will most likely benefit from life coaching are needed.

SUBMITTER: Knudsen KB

PROVIDER: S-EPMC5916455 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Living with cystic fibrosis - a qualitative study of a life coaching intervention.

Knudsen Karin Bæk KB Boisen Kirsten Arntz KA Katzenstein Terese Lea TL Mortensen Laust Hvas LH Pressler Tacjana T Skov Marianne M Jarden Mary M

Patient preference and adherence 20180419

<h4>Background</h4>Cystic fibrosis (CF) is a chronic, life-shortening disease with a significant treatment burden. To support young adults with CF in their everyday life, we previously conducted a life coaching feasibility trial (published elsewhere). The aim of the current study was to explore how life coaching was experienced by study participants within the context of their lives with CF.<h4>Methods</h4>A qualitative study using individual interviews. Respondents (n=14) were recruited from th ...[more]

PMID: 29720874

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Project description:BACKGROUND:Over the last two decades, lifespan has increased significantly for people living with cystic fibrosis (CF). However, several studies have demonstrated that many young adults with CF report mental health problems and poor adherence to their prescribed treatments, challenging their long-term physical health. Treatment guidelines recommend interventions to improve adherence and self-management. The aim of this study was to test the feasibility of a life coaching intervention for young adults with CF. METHODS:A randomized, controlled feasibility study was conducted at the CF Center at Copenhagen University Hospital, Rigshospitalet. Participants were young adults with CF, aged 18-30 years without severe intellectual impairments. Participants were randomized to either life coaching or standard care. The intervention consisted of up to 10 individual, face-to-face or telephone coaching sessions over a period of 1 year. Primary outcomes were recruitment success, acceptability, adherence to the intervention, and retention rates. Secondary outcome measures included health-related quality of life, adherence to treatment, self-efficacy, pulmonary function, body mass index, and blood glucose values. RESULTS:Among the 85 eligible patients approached, 40 (47%) were enrolled and randomized to the intervention or control group; two patients subsequently withdrew consent. Retention rates after 5 and 10 coaching sessions were 67% and 50%, respectively. Reasons for stopping the intervention included lack of time, poor health, perceiving coaching as not helpful, lack of motivation, and no need for further coaching. Coaching was primarily face-to-face (68%). No significant differences were found between the groups on any of the secondary outcomes. CONCLUSION:Both telephone and face-to-face coaching were convenient for participants, with 50% receiving the maximum offered coaching sessions. However, the dropout rate early in the intervention was a concern. In future studies, eligible participants should be screened for their interest and perceived need for support and life coaching before enrollment.

Project description:BACKGROUND:Adolescence is a challenging period, where youth face rapid changes as well as increasing socioemotional demands and threats, such as bullying and cyberbullying. Adolescent mental health and well-being can be best supported by providing effective coaching on life skills, such as coping strategies and protective factors. Interventions that take advantage of online coaching by means of chatbots, deployed on Web or mobile technology, may be a novel and more appealing way to support positive mental health for adolescents. OBJECTIVE:In this pilot study, we co-designed and conducted a formative evaluation of an online, life skills coaching, chatbot intervention, inspired by the positive technology approach, to promote mental well-being in adolescence. METHODS:We co-designed the first life skills coaching session of the CRI (for girls) and CRIS (for boys) chatbot with 20 secondary school students in a participatory design workshop. We then conducted a formative evaluation of the entire intervention-eight sessions-with a convenience sample of 21 adolescents of both genders (mean age 14.52 years). Participants engaged with the chatbot sessions over 4 weeks and filled in an anonymous user experience questionnaire at the end of each session; responses were based on a 5-point Likert scale. RESULTS:A majority of the adolescents found the intervention useful (16/21, 76%), easy to use (19/21, 90%), and innovative (17/21, 81%). Most of the participants (15/21, 71%) liked, in particular, the video cartoons provided by the chatbot in the coaching sessions. They also thought that a session should last only 5-10 minutes (14/21, 66%) and said they would recommend the intervention to a friend (20/21, 95%). CONCLUSIONS:We have presented a novel and scalable self-help intervention to deliver life skills coaching to adolescents online that is appealing to this population. This intervention can support the promotion of coping skills and mental well-being among youth.

Project description:BackgroundThe extend of lung disease remains the most important prognostic factor for survival in patients with cystic fibrosis (CF), and lack of adherence is the main reason for treatment failure. Early detection of deterioration in lung function and optimising adherence are therefore crucial in CF care. We implement a randomized controlled trial to evaluate efficacy of telemonitoring of adherence, lung function, and health condition in combination with behavior change interventions using innovative digital technologies.MethodsThis is a multi-centre, randomized, controlled, non-blinded trial aiming to include 402 patients ≥ 12 years-of-age with CF. A standard-of-care arm is compared to an arm receiving objective, continuous monitoring of adherence to inhalation therapies, weekly home spirometry using electronic devices with data transmission to patients and caring physicians combined with video-conferencing, a self-management app and professional telephone coaching. The duration of the intervention phase is 18 months. The primary endpoint is time to the first protocol-defined pulmonary exacerbation. Secondary outcome measures include number of and time between pulmonary exacerbations, adherence to inhalation therapy, changes in forced expiratory volume in 1 s from baseline, number of hospital admissions, and changes in health-related quality of life. CF-associated medical treatment and care, and health care related costs will be assessed by explorative analysis in both arms.DiscussionThis study offers the opportunity to evaluate the effect of adherence interventions using telemedicine capable devices on adherence and lung health, possibly paving the way for implementation of telemedicine in routine care for patients with CF.Trial registrationThis study has been registered with the German Clinical Trials Register (Identifier: DRKS00024642, date of registration 01 Mar 2021, URL: https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00024642 ).

Project description:BackgroundMany children with asthma live with frequent symptoms and activity limitations, and visits for urgent care are common. Many pediatricians do not regularly meet with families to monitor asthma control, identify concerns or problems with management, or provide self-management education. Effective interventions to improve asthma care such as small group training and care redesign have been difficult to disseminate into office practice.Methods and designThis paper describes the protocol for a randomized controlled trial (RCT) to evaluate a 12-month telephone-coaching program designed to support primary care management of children with persistent asthma and subsequently to improve asthma control and disease-related quality of life and reduce urgent care events for asthma care. Randomization occurred at the practice level with eligible families within a practice having access to the coaching program or to usual care. The coaching intervention was based on the transtheoretical model of behavior change. Targeted behaviors included 1) effective use of controller medications, 2) effective use of rescue medications and 3) monitoring to ensure optimal control. Trained lay coaches provided parents with education and support for asthma care, tailoring the information provided and frequency of contact to the parent's readiness to change their child's day-to-day asthma management. Coaching calls varied in frequency from weekly to monthly. For each participating family, follow-up measurements were obtained at 12- and 24-months after enrollment in the study during a telephone interview. The primary outcomes were the mean change in 1) the child's asthma control score, 2) the parent's quality of life score, and 3) the number of urgent care events assessed at 12 and 24 months. Secondary outcomes reflected adherence to guideline recommendations by the primary care pediatricians and included the proportion of children prescribed controller medications, having maintenance care visits at least twice a year, and an asthma action plan. Cost-effectiveness of the intervention was also measured.DiscussionTwenty-two practices (66 physicians) were randomized (11 per treatment group), and 950 families with a child 3-12 years old with persistent asthma were enrolled. A description of the coaching intervention is presented.

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Living with cystic fibrosis - a qualitative study of a life coaching intervention.

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Living with cystic fibrosis - a qualitative study of a life coaching intervention.

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