Parent resuscitation preferences for young people with severe developmental disabilities.
Child; Female; Humans; Male; Adult; Attitude to Health; Choice Behavior; Massachusetts; Program Evaluation; Analysis of Variance; Organizational Policy; adolescent; Preschool; retrospective studies; Parents/education/psychology; DNAR; Attitude to Health; Developmental Disabilities/th [Therapy]; Health Education/og [Organization & Administration]; Parents; Resuscitation Orders/px [Psychology]; Advance Care Planning/og [Organization & Administration]; Advance Care Planning/organization & administration; Consent Forms; Developmental Disabilities/co [Complications]; Developmental Disabilities/complications/therapy; documentation; Health Education/organization & administration; Parents/ed [Education]; Parents/px [Psychology]; Resuscitation Orders/psychology; Skilled Nursing Facilities/og [Organization & Administration]; Skilled Nursing Facilities/organization & administration; Treatment Refusal/psychology; Treatment Refusal/px [Psychology]
OBJECTIVE: To determine the relationship of providing explanatory information regarding resuscitation to DNR status for parents and guardians of young people who reside in a pediatric skilled nursing facility., DESIGN: Retrospective, quasi-experimental study of policy change, with each individual serving as his or her own control. Interval comparisons were made between resuscitation choices before and after information was provided to families. For those who were originally in the full resuscitation group, comparisons were also made between those who changed to DNR and those who did not., SETTING: Pediatric skilled nursing facility in Massachusetts., PARTICIPANTS: Sixty individuals with severe mental retardation and complex medical problems, between the ages of approximately 2 and 32 years., MEASUREMENTS: Review of records regarding resuscitation choices and changes, with each person serving as his or her own control. Both univariate and multivariate analyses were performed on individuals who were in the full resuscitation group at the initiation of the study to determine distinguishing characteristics between those who remained in that group from those who changed to DNR., RESULTS: The families of 11 (18%) of 60 patients had requested DNR orders prior to requirement of written preference for resuscitation or DNR in the event of cardiopulmonary arrest. After provision of informative material, there was an increase to 26 patients (43%) who were designated DNR (P < . 001). There was no significant difference in characteristics between the groups that changed to DNR and those that remained full resuscitation, although there was a marginal trend of children in the group with an acquired etiology for their developmental disabilities were more apt to have their resuscitation status changed than those with congenital diagnoses (P = .053)., CONCLUSION: When families are provided with explanatory information regarding resuscitation in a nonacute, pediatric skilled nursing home setting, there is a significant increase in request for DNR.
2006
Friedman SL
Journal Of The American Medical Directors Association
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.jamda.2005.06.004" target="_blank" rel="noreferrer">10.1016/j.jamda.2005.06.004</a>
Problem of nonadherence in chronically ill adolescents: strategies for assessment and intervention
Humans; Family Relations; Risk Factors; Adolescent Behavior; Patient Education as Topic; adolescent; Adolescent Transitions; Intervention; Interventions; Chronic Disease/psychology/therapy; Treatment Refusal/psychology
PURPOSE OF REVIEW: Nonadherence to medical treatment is a significant problem for adolescents with chronic illness, with significant morbidity and mortality. Yet efforts to assess and treat the problem have been limited. We reviewed the literature on the factors associated with nonadherence and focused on nonadherence in a series of interviews with staff at a pediatric transplant program. This paper describes some of our findings, offers guidelines for assessing nonadherence in a primary care setting, and discusses strategies and interventions aimed at enhancing adherence. We refer to clinical cases derived from our interviews with renal transplant staff and our own clinical practice. RECENT FINDINGS: Nonadherence to treatment recommendations occurs in approximately one-third of adolescents with a chronic illness. Factors that have been associated with nonadherence include psychiatric illness, psychological factors, family issues, and health problems. Although extensive research has been done on the problem of poor patient adherence in pediatric chronic illnesses, the prevalence of nonadherence remains high, and the research itself is problematic because of different definitions and methods of assessment used. Novel treatment strategies to improve adherence have been proposed, and data on these are emerging. SUMMARY: Nonadherence in adolescents with chronic illness is a serious problem in need of greater recognition and intervention and further research. The primary care physician may be able to reduce nonadherence by routinely evaluating for adherence issues and initiating a targeted strategy to combat nonadherence when it is found. This review describes strategies and specific approaches for identifying and treating nonadherence in adolescents and their families.
2005
Smith BA; Shuchman M
Current Opinion In Pediatrics
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/01.mop.0000176443.26872.6e" target="_blank" rel="noreferrer">10.1097/01.mop.0000176443.26872.6e</a>
Medication non-adherence in the adolescent renal transplant recipient: a clinician's viewpoint
Humans; Adolescent Psychology; Counseling; Patient Education as Topic; adolescent; Adolescent Transitions; Monitoring; Physiologic; Kidney Failure; Treatment Refusal/psychology; Patient Compliance/psychology; Chronic/psychology/surgery; Graft Rejection/psychology; Immunosuppressive Agents/administration & dosage; Kidney Transplantation/immunology/psychology; Self Administration; Transplantation/psychology
Recent advancements in immunosuppression and surgical techniques have significantly improved the outcome of kidney transplantation in the pediatric population. Adolescents enjoy the best 1-year graft survival of any age group. However, the long-term transplant outcome in adolescents is disappointing. Non-adherence with immunosuppressive medications is one of the most important contributing factors for graft rejection and loss in teenagers. The impact of non-adherence is perceived to be far more powerful in adolescent transplant recipients than in the transplant population as a whole. To better understand adolescent non-adherence, the process of transplantation must be placed in the context of adolescent development. Adolescents try to establish their identity and autonomy separately from the parents; however at the same time, adolescents with chronic illness require help, support and guidance from adults, including parents and medical personnel. Adolescents have limited ability to anticipate abstractly the long-term consequences of their immediate actions. This inconsistency can create frustration in both adolescents and in the supporting systems around them. Despite the significant consequences of adolescent non-adherence, research in this area is scarce. There are still no established definitions, standardized diagnostic methods and effective interventions to treat and prevent this problem. We propose the recommendations to approach the problems of adolescent transplant non-adherence from the transplant clinician's viewpoint. With early identification and appropriate interventions, significant improvement in adolescent graft survival is possible.
2005
Rianthavorn P; Ettenger RB
Pediatric Transplantation
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1399-3046.2005.00358.x" target="_blank" rel="noreferrer">10.1111/j.1399-3046.2005.00358.x</a>
The attitude of young adults with chronic disease or handicaps towards enforced treatment and euthanasia
Female; Humans; Male; Adolescent Psychology; Attitude to Health; Medical Futility; Prognosis; Questionnaires; Attitude to Death; Physician's Role; Informed Consent; Israel; Case-Control Studies; quality of life; adolescent; decision making; Family/psychology; Treatment Refusal/psychology; Chronic Disease/psychology; Disabled Persons/psychology; Euthanasia/psychology; Terminal Care/psychology
One hundred fifty-nine young adults in the 17-18 year old age group suffering from chronic disease or handicap participated in this study which examined their attitudes towards enforced treatment and euthanasia in terminal patients. The comparison group included 120 healthy high school pupils of the same age group. A total of 42.6% of the chronic patients thought that enforced treatment was justified even if the patient didn't understand its importance and didn't want treatment (in comparison with 23.3% of the healthy pupils who felt the same way). Of the chronic patients, 54.4% thought that euthanasia was justified in consenting terminal patients (in comparison with 74.2% of the healthy pupils who felt the same way; P < 0.01). This may be explained by the feeling of total dependency of chronic patients upon medication and treatment. On the other hand, they may be opposed to euthanasia because of their own personal hope that a cure would be found for their severe and chronic condition. Both groups studied believed that physicians should always consider the subjective suffering of the patient and his family, as well as the short and long term prognosis when deciding about therapy.
1999
Brook U
Patient Education And Counseling
1999
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0738-3991(98)00125-6" target="_blank" rel="noreferrer">10.1016/s0738-3991(98)00125-6</a>
Non-compliance in adolescents with chronic lung disease: causative factors and practical approach
Female; Humans; Family Relations; adolescent; Chronic disease; Cystic Fibrosis/therapy; Adolescent Behavior/psychology; Treatment Refusal/psychology; Asthma/therapy; Lung Diseases/therapy; Respiratory Insufficiency/therapy
Compliance with medical therapies may be considered a challenge in many age groups but especially so in adolescence. The adolescent patient with chronic lung disease may struggle to progress smoothly through the phases of adolescence because of fears of peer rejection and isolation occurring as a result of social, emotional and physical consequences of their underlying lung disease and its treatment. Non-compliance can be viewed as a scale from episodic compliance to frequent compliance with patients moving between ends of the spectrum. Health professionals need to consider the likely degree of compliance with therapies that they recommend, discuss the issue of compliance and the consequences of non-compliance with the adolescent patient and arrive at a workable compromise. This article discusses persistent asthma, cystic fibrosis and advanced neuromuscular disease to illustrate practical approaches to enhancing patient compliance in adolescence.
2001
Fitzgerald D
Paediatric Respiratory Reviews
2001
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1053/prrv.2001.0149" target="_blank" rel="noreferrer">10.1053/prrv.2001.0149</a>