S. Jedeloo

Crossing the transition chasm: Experiences and recommendations for improving transitional care of young adults, parents and providers

BACKGROUNDnTransition from paediatric to adult healthcare has received little attention in the Netherlands. This study aimed to: (i) map experiences with the transfer to adult care of young adults with chronic conditions; and (ii) identify recommendations for transitional care of young adults, their parents and healthcare providers.nnnMETHODSnSemi-structured interviews with 24 young adults after transfer (aged 15-22 years; diagnosed with haemophilia, diabetes mellitus, spina bifida, congenital heart disorders, cystic fibrosis, juvenile rheumatoid arthritis or sickle cell disease), 24 parents and 17 healthcare providers. Thematic analysis was performed.nnnRESULTSnOnly the haemophilia department offered a structured transition programme, most patients had not been prepared for transition. Experiences and views of patients, parents and professionals mainly overlapped and were condensed into four core themes. Two are related to moving to adult care: (1) leaving paediatric care is a logical step. Leaving familiar surroundings was harder for parents than for young adults who displayed a positive wait-and-see attitude; and (2) transition is complicated by cultural gaps between paediatric and adult services. Young adults and parents felt lost after transfer and recommended their peers to be alert and involved. Providers also recognized the cultural chasm between both services and worried about non-compliance, lost to follow-up and lack of independence. Two other themes indicated priorities for improvement: (3) better patient and parent preparation for differences between healthcare settings and for new roles and responsibilities with respect to self-management; and (4) more collaboration and personal links between paediatric and adult care providers.nnnCONCLUSIONSnAction is required to cross the chasm between paediatric and adult-oriented care. Preparation for transition should start early and focus on strengthening adolescents independency without undermining parental involvement. Building bridges between services, gaining trust and investing in new personal relations is a challenge for all parties involved: transition is about responding and bonding.

Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors.

PURPOSEnTo explore associations between adolescents perception of their readiness to transfer to adult care and socio-demographic and disease-related characteristics, effect of the condition, self-management ability, and attitude toward transition.nnnMETHODSnA cross-sectional study was conducted in a Dutch university hospital, where all adolescents (12-19 years) with somatic chronic conditions (n = 3,648) were invited to participate in a web-based questionnaire. Invitations were issued to those without an intellectual disability and who had been under treatment for at least 3 years.nnnRESULTSnIn all, 30% (n = 1,087) of the adolescents responded; 954 assessed their perception of readiness for transfer. The majority (56%) felt that they were ready for transfer. Logistic regression analyses showed that 48% of the total variance in transfer readiness (TR) could be explained. Feeling more self-efficacious in skills for independent hospital visits and a greater perceived independence during consultations were found to be most strongly associated with being ready to transfer. Higher TR was associated with older age, but age did not prove to be the most important explaining variable. Adolescents with a more positive attitude toward transition and those who reported more discussions related to future transfer also felt more ready. Disease-related factors and effect of the condition including quality of life were only weakly associated with higher TR.nnnCONCLUSIONSnAdolescents attitude to transition and their level of self-efficacy in managing self-care seem to be the keystones to TR. This study suggests that individual transition plans and readiness assessments might prove to be beneficial. Strengthening adolescents independence and self-management competencies, combined with early preparation and repeated discussions on transition, seem to be useful strategies to increase adolescents readiness for transfer to adult care.

Preferences for health care and self-management among Dutch adolescents with chronic conditions: A Q-methodological investigation

BACKGROUNDnAdolescents with chronic conditions have to learn to self-manage their health in preparation for transitioning to adult care. Nurses often struggle with how to approach youth with chronic conditions successfully. Little is known about the preferences and attitudes of these young people themselves.nnnOBJECTIVEnTo uncover preferences for self-management and hospital care of adolescents with various chronic conditions.nnnDESIGN AND METHODnA Q-methodological study was conducted. Semi-structured interviews were held with adolescents who rank-ordered 37 opinion statements on preferences for care delivery and self-management. They were asked to motivate their ranking. By-person factor analysis was conducted to uncover patterns in the rankings of statements. The factors were described as preference profiles.nnnPARTICIPANTS AND SETTINGnA purposive sample of 66 adolescents (12-19 years) treated in a university childrens hospital in the Netherlands was invited to participate. Thirty-one adolescents, 16 boys and 15 girls with various chronic conditions eventually participated (response 47%). Eight participants (26%) had a recently acquired chronic condition, while the rest (74%) had been diagnosed at birth or in the first 5 years of life.nnnRESULTSnFour distinct preference profiles for health care delivery and self-management were identified: Conscious & Compliant; Backseat Patient; Self-confident & Autonomous; and Worried & Insecure. Profiles differ in the level of independence, involvement with self-management, adherence to therapeutic regimen, and appreciation of the parents and health care providers role. The desire to participate in treatment-related decisions is important to all preference profiles. The profiles are recognizable to adolescents and nurses alike. As Q-methodology allows no inferences with respect to the relative distribution of these profiles in a given population, only tentative hypotheses were formulated about associations between profiles and patient characteristics.nnnCONCLUSIONnThis study increases our understanding of different subjectivities of adolescents living with a chronic condition related to their treatment and health. There is no one size fits all approach to adolescent health care, but rather a limited number of distinct preference profiles. This study demonstrates the value of a non-disease-specific approach in that adolescents with various chronic conditions were found to have much in common. The profiles seem a promising tool for nurses to actively seek adolescents opinion and participation in health care and will be further explored.

Q-methodology to identify young adult renal transplant recipients at risk for nonadherence

Background. Young adult renal transplant recipients may display patterns of behavior that affect graft survival. The present study aimed to identify young adults at risk for nonadherent behavior by investigating their attitudes about posttransplant health lifestyle. Method. A Q-methodological study was conducted. Participants were asked to rank-order statements on issues potentially associated with (non)adherence. Factor analysis was applied to uncover patterns in the ranking of statements. The resulting factors represent attitudes and are described using a composite ranking of the statements. As a first test of discriminated validity, a different group of 34 young renal transplant patients was asked how well the factor descriptions fitted them. Results. Twenty-six young renal transplant recipients (18–25 years) participated in the study. They were remarkably willing to discuss sensitive issues when confronted with statements on cards. Four distinct attitude profiles concerning posttransplant health lifestyle were found among these young adults: (a) concerned and controlled, (b) appearance orientated, (c) opinionated and independent, and (d) easy going and pliable. In a follow-up analysis, self-categorization proved to discriminate well between the four attitude profiles in 67% of the respondents. Conclusions. Using Q-methodology, four attitude profiles about posttransplant health lifestyle were uncovered. Self-categorization on these attitudes seems feasible and may be a useful screening aid to identify young adults at risk for nonadherence.

What we want: Chronically ill adolescents' preferences and priorities for improving health care

Background: As important users of health care, adolescents with chronic conditions deserve to be consulted about their experiences and expectations. This study aimed to explore chronically ill adolescents’ preferences regarding providers’ qualities, and outpatient and inpatient care. Furthermore, suggestions for improvement of service delivery were collected. Methods: This research was a sequential mixed methods study in adolescents aged 12–19 years with various chronic conditions treated in a university children’s hospital. Methods comprised 31 face-to-face interviews at home, a hospital-based peer research project in which nine adolescents interviewed 34 fellow patients, and a web-based questionnaire (n = 990). Emerging qualitative themes were transformed into questionnaire items. Results: Having “a feeling of trust” and “voice and choice” in the hospital were central to these adolescents. Regarding providers’ qualities, “being an expert” and “being trustworthy and honest” were ranked highest, followed by “being caring and understanding”, “listening and showing respect”, and “being focused on me”. Regarding outpatient consultations, preferences were ranked as follows: “answering all questions”; “attending to my and my parents’ needs”; and “clear communication”, while “limited waiting times” and “attractive outpatient surroundings” scored lowest. Regarding hospitalization, adolescents most preferred to “avoid pain and discomfort”, “keep in touch with home”, and “be entertained”, while “being hospitalized with peers” and “being heard” were least important. Regarding priorities for improvement, 52% of the respondents felt that more attention should be paid to older children, followed by enabling more contact with family and friends (45%), shorter waiting times (43%), and more activities to meet fellow patients (35%). Conclusion: Adolescents prefer technically competent providers, who are honest and trustworthy, and attend to their needs. As they gradually grow out of the pediatric environment, they desire staff attitudes to become less childish and more age-appropriate, and welcome being treated as an equal partner in care. Health care professionals should inquire into preferences and adjust their communication style accordingly.

Exciting but exhausting: experiences with participatory research with chronically ill adolescents.

Backgroundu2002 Adolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation of services or in research. Little is known about the usefulness of the participatory approach in adolescent health research.

Four perspectives on self-management support by nurses for people with chronic conditions: A Q-methodological study

BACKGROUNDnSelf-management support is a major task of nurses in chronic care. Several conceptualizations on what self-management support encompasses are described in the literature. However, nurses attitudes and perceptions related to self-management support are not known.nnnOBJECTIVEnTo reveal distinctive perspectives of nurses toward self-management support in chronic care.nnnDESIGN AND METHODSnA Q-methodological study was conducted in which nurses rank-ordered 37 statements on self-management support. Thereafter they motivated their ranking in semi-structured interviews.nnnPARTICIPANTS AND SETTINGnA purposive sample of 49 Dutch nurses with a variety of educational levels, age, and from different healthcare settings was invited by e-mail to participate in the study. Thirty-nine nurses (aged 21-54 years) eventually participated. The nurses worked in the following settings: hospital (n=11, 28%), home-care (n=14, 36%), mental health care (n=7, 17%), elderly care (n=6, 15%) and general practice (n=1, 3%).nnnRESULTSnFour distinct perspectives on the goals for self-management support were identified: the Coach, the Clinician, the Gatekeeper and the Educator perspective. The Coach nurse focuses on the patients daily life activities, whereas the nurses of the Clinician type aim to achieve adherence to treatment. The goal of self-management support from the Gatekeeper perspective is to reduce health care costs. Finally, the Educator nurse focuses on instructing patients in managing the illness.nnnCONCLUSIONSnThe changing role of chronic patients with regard to self-management asks for a new understanding of nurses supportive tasks. Nurses appear to have dissimilar perceptions of what self-management support entails. These distinct perceptions reflect different patient realities and demand that nurses are capable of reflexivity and sensitivity to patient needs. Different perspectives toward self-management support also call for diverse competencies and consequently, also for adaptation of educational nursing programs.

Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL.

BackgroundThe Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as ‘buddies’) organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. The attendees are young people who still have to transfer to adult care. This study aimed to explore the effects of this specific form of peer-to-peer support on the self-management of young people (16–25xa0years) with ESRD who participated in Camp COOL (CC) (hereafter referred to as ‘participants’).MethodsA mixed methods research design was employed. Semi-structured interviews (nu2009=u200919) with initiators/staff, participants, and healthcare professionals were conducted. These were combined with retrospective and pre-post surveys among participants (nu2009=u200962), and observations during two camp weeks.ResultsSelf-reported effects of participants were: increased self-confidence, more disease-related knowledge, feeling capable of being more responsible and open towards others, and daring to stand up for yourself. According to participants, being a buddy or having one positively affected them. Self-efficacy of attendees and independence of buddies increased, while attendees’ sense of social inclusion decreased (measured as domains of health-related quality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader.ConclusionsCamp COOL allowed young people to support each other in adjusting to everyday life with ESRD. Participating in the camp positively influenced self-management in this group. Peer-to-peer support through buddies was much appreciated. Support from young adults was not only beneficial for adolescent attendees, but also for young adult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Together with nephrologists in adult care, they could take on a role in selecting buddies.

A NORMAL LIFE WITH AN UNHEALTHY BODY: SELF-IDENTITY IN ADOLESCENTS GROWING UP WITH CHRONIC ILLNESS

INTRODUCTION: Chronic illness is often described in terms of biographic disruption. However, for those growing up with congenital disorders, an unhealthy body is the norm. An important developmental task in adolescence is the formation of self-identity. How does a chronic disorder influence the development of self-identity in adolescents? OBJECTIVE: Our aim was to investigate attitudes and preferences of adolescents living with chronic disorders. METHODS: A qualitative study was conducted by using semistructured interviews that focused on daily life issues. The sample consisted of 31 adolescents (aged 12–19 years) with various chronic disorders who were randomly selected from the patient database of Erasmus Medical Center-Agia Sophia Childrens Hospital. Data analysis was performed by using a qualitative analysis computer program (ATLAS.ti, Berlin, Germany). RESULTS: For most adolescents with chronic disorders, living with illness is “normal.” By comparing themselves with healthy peers, they recurrently stress their own normality. They strongly agreed with the statement, “I am like everyone else, my illness is something extra.” Therefore, disclosure of health problems remains a sensitive issue, and contact with fellow patients is not often sought. Most held optimistic views about their futures, and only a minority told problematic accounts of the acceptance of their dysfunctional bodies. CONCLUSIONS: Normalization of an unhealthy childhood seems to be an important strategy in identity-forming in adolescents. It may be interpreted as denial, but adolescents consider denial to be “dangerous” and “stupid.” We view normalization as a strategy to accept reality while preventing illness to dominate their life: “I try not to think about it, not because it scares me, but because its there.”

Verpleegkundige ondersteuning bij zelfmanagement en eigen regie

Onder redactie van AnneLoes van Staa, Ada ter Maten-Speksnijder en Lausanne Mies. Dit boek helpt verpleegkundigen, studenten verpleegkunde en verpleegkundig specialisten het zelfmanagement van mensen met chronische aandoeningen te ondersteunen. Dat behoort tot de kerntaak van elke verpleegkundige. Het boek geeft daarvoor de kennis, traint de vaardigheden en bespreekt de gewenste attitude, zoals een open houding, goede gespreksvoering en samenwerking met de patient en andere (mantel)zorgverleners.