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Nursing booklet

N AT I O N A L C O N S E N S U S
S TA N DA R D S F O R T H E
N U R S I N G M A N AG E M E N T
O F C YS T I C F I B R O S I S
U K C y s t i c F i b r o s i s
May 2001
N u r s e S p e c i a l i s t G r o u p
C y s t i c F i b r o s i s T r u s t R e g C h a r i t y N o 1 0 7 9 0 4 9 R e g C o m p a n y N o 3 8 8 0 2 1 3
UK Cystic Fibrosis Nurse Specialist
Group Working Party
Thanks go to all members of the working party who helped compile this document. We are alsograteful for the comments and suggestions from parents, patients and other professionals whoreviewed this document.
Chairman
Great Ormond Street Hospital for Children, London Janis Bloomer RGN RSCN Royal Victoria Infirmary, Newcastle Jenny Cottrell RGN RSCNAlder Hey Children’s Hospital, Liverpool These consensus standards were compiled by cystic fibrosis clinical nurse specialists
(paediatrics and adults) working in the community and the hospital and based in regions
around the UK. It is intended that by referring to these consensus standards all nurses
involved in the care of cystic fibrosis will provide an optimum level of care for patients
and their families.
11 London RoadBromleyKent BR1 1BYTel: 020 8464 7211Fax 020 8313 0472enquiries@cftrust.co.ukwww.cftrust.co.uk NATIONAL CONSENSUS STANDARDS
FOR THE NURSING MANAGEMENT OF
CYSTIC FIBROSIS
CONTENTS
1. INTRODUCTION
Specialist care and the multi-disciplinary team The cystic fibrosis clinical nurse specialist 2. RECOMMENDATIONS FOR BEST PRACTICE
Issues surrounding adolescence and adulthood Issues surrounding the care of advanced cystic fibrosis 3. STANDARDS OF CARE
Self-administration of intravenous therapy 3.10 Cystic fibrosis related diabetes (insulin dependant) 3.11 Transfer from paediatric to adult care 3.12 Terminal care and symptom management 4. REFERENCES
1. INTRODUCTION
Caring for people with cystic fibrosis (CF) can be complex and demanding and nurses findingthemselves in this situation must ensure that they liaise closely with the nearest Specialist CFCentre. This document is offered as a guideline to nurses, both specialist and general, who care forpeople with CF, although throughout the text reference is made to the nurse specialist.
This document is not designed to be a textbook on CF or to be used as a detailed care plan orprotocol, rather as a guide only. Nursing is a partnership between the patients, carers and nurses, ifthe suggestions given are used within the parameters of advocacy, clinical management, education,support, advice and research, a holistic plan of care can be made. Although this document does not follow the strict criteria required for guidelines1, it does offerexamples of evidence with some recommendations made on the basis of these.
Scheme used for grading strength of evidence and recommendations
Levels of evidence
Level I - Randomised controlled trials, meta-analysis or systematic reviews
Level II - Cohort or case-control studies
Level III - Uncontrolled studies or consensus
Recommendations
*
** Based on level II or extrapolated recommendation from level I *** Based on level II or extrapolated recommendation from level I or level II 1.1 Specialist care and the multi-disciplinary team
Cystic fibrosis is the most common, life-threatening inherited disease in the United Kingdomaffecting approximately 1:2500 live births. Cystic fibrosis is a multi system disorder and althoughprimarily the respiratory and digestive systems are involved there are often problems with the liver,joints, diabetes, fertility and reproduction2.
In 1989 the gene coding for cystic fibrosis was located on the long arm of chromosome seven andalthough ̅F508 is the most common mutation found in the United Kingdom3, more than 900mutations of the gene have been discovered to date (May 2001).
Advances in medical management over the last few years have improved both quality of life andlongevity. However, due to the complexity of the disease it is widely recognised that people withCF should be cared for using a multi-disciplinary team approach. Cystic fibrosis teams in the UKinclude doctors, nurse specialists, dietitians, physiotherapists, psychologists and/or social workers.
In addition it is recommended that these teams are supported by staff such as respiratory functiontechnicians and ward nurses skilled in caring for people with cystic fibrosis4.
The multi-disciplinary team works very closely together to ensure a holistic approach to the care oftheir patients. Good communication is paramount and the team must allow time for regularmeetings. Nurses working in areas where there is no opportunity to work within a team mustcommunicate with the nearest Specialist CF Centre, both for their own support and to assureoptimum care for their patients5.
1.2 The cystic fibrosis clinical nurse specialist
The roles of a nurse specialist often overlap and impact on each other
ADVOCACY
CLINICAL
SUPPORT AND
MANAGEMENT
EDUCATION
RESEARCH
MANAGEMENT
The cystic fibrosis nurse specialist has a five-fold responsibility to patients and their families andthe staff that are involved in the care of those patients. These areas include: advocacy, clinicalmanagement, advice and support, education, research and management6, 7, 8.
Advocacy: There are many demands made on both the patient and the CF team therefore patientand family advocacy is the most important role for the nurse specialist. Patient wellbeing andsatisfaction with care are paramount and successful advocacy can ensure this8. Clinical management: The nurse specialist must take part in decision making and monitoring ofcare. In addition to the practical, day to day care that the nurse specialist offers, their responsibility isto be aware of all treatment modalities used in the management of CF and to ensure that each patientreceives optimum care for their individual needs. The role of the nurse specialist is also to act as alink between patient and family, community services and the hospital multi-disciplinary team.
Support and advice: Both patients and their families and professional colleagues will benefit fromthe support, liaison and advice available from the nurse specialist9. This can be as a consistent carer,counsellor or as a confidante. Problems are often resolved more easily if pathways of communicationare well established for all parties10.
Education for patient, families and carers: There are many treatment regimens that have to belearnt throughout the patient’s life. Successful teaching of the patient and all concerned (parent,carer, school, work colleagues) and their understanding of the disease process, will ensure thattreatment is carried out safely and effectively and that issues surrounding adherence to treatmentcan be more successfully dealt with.
Education, research and management: Nurse specialists are responsible for developing their ownprofessional practice through reflection, participation on post registration courses and attendanceat conferences and meetings. This also ensures that they keep up to date with new advances intreatment and new developments in the world of CF research enhancing their own research basedpractice 10,11.
2. RECOMMENDATIONS FOR BEST PRACTICE
Diagnosis
Diagnosis of a life limiting disease can be likened to bereavement and needs to be handled withhonesty and sensitivity by skilled personnel. A diagnosis of CF may be made at any age andalthough most patients are diagnosed within the first year of life it is not unusual for adults,especially males to be diagnosed later on in life. When clinical evidence leads to suspicion of CFdiagnosis can be made using a number of methods12: prenatal diagnosis - chorionic villus sampling
sweat testing
genotyping
nasal potential differences
pancreatic function tests
stool elastase
• Diagnosis should be carried out in a Specialist CF Centre or CF Clinic experienced in the techniques being used and if CF is confirmed immediate referral must be made to a CFteam13.
• The nurse specialist will ensure that pre-diagnosis support and counselling is available14.
• The nurse specialist should be present when the diagnosis is being given either to a child and • The nurse specialist will help to determine the appropriate timing (to avoid inappropriate referral) for the introduction of information regarding15: Contact numbers and availability of the CF team.
Involvement and liaison with the primary health care team.
Support agencies available, both local and national.
Government support.
• The specialist nurse will offer continued psychosocial advice, support and counselling to the patient and their family with particular reference to: Continued education about the disease.
The genetic implications to the immediate and extended family.
Expectations of care and day-to-day treatment regimens.
• The nurse specialist will be available to offer advice, education and support to the patient, their families/carers and all staff involved10.
2.2 Inpatient care
• Ward nurses will have access to a CF nurse specialist.
• Each patient will be cared for or supported by specialist nurses who have a knowledge and experience of CF16, the disease process and the clinical and psychological outcomes, withspecialist knowledge of: psychological issues - living with a life limiting disorder
issues surrounding diagnosis
nutritional requirements
enteral feeding
CF related diabetes
intravenous therapy
respiratory complications and support
nebuliser therapy
care of indwelling venous devices
infection control
osteoporosis
liver disease
terminal care and symptom management
• Nurses caring for patients with CF and supported by a nurse specialist must assess, plan, implement and monitor care according to the needs of each patient at every admission, takinginto account the variability of the disease.
• The nurse specialist will ensure that each patient has access to all members of the multi- disciplinary team as often as their needs dictate.
• The nurse specialist will ensure a partnership in care with the patient and their • The nurse specialist will be available to offer advice, education and support to the patient, their families/carers and all staff involved18.
• The nurse specialist, in liaison with ward staff will ensure that discharge planning needs are met with special reference to the GP, the primary health care team, the shared care hospitaland school (where appropriate).
2.3 Outpatient care
• The nurse specialist will ensure that at every routine appointment each patient has access to13: a doctor
a physiotherapist
a dietitian
a nurse specialist
a social worker
a psychologist
• The nurse specialist will ensure that at every routine appointment each patient has measured lung function
oxygen saturation
weight and height
sputum or cough swab for microbiology
• The nurse specialist, in conjunction with appropriate members of the CF team, will be responsible for specific aspects of clinical management such as13: nutritional needs
nebuliser therapy
care of indwelling venous devices
self administration of intravenous therapy
enteral feeding
oxygen therapy
psychosocial and emotional support
• The nurse specialist will liaise with patient and family on issues surrounding cross-infection • The nurse specialist will ensure that all patients receive a comprehensive Annual Review in a recognised Specialist CF Centre or CF Clinic20.
• The nurse specialist will liaise with the CF team, the primary health care team, shared care hospital, work and school (where appropriate)21.
• The nurse specialist will be available to offer advice, education and support to the patient, their families/carers and all staff involved10.
2.4 Community care
The nurse specialist will continue to support the patient in the community to ensure an equality ofcare to that offered in hospital.
• Each patient will have access to a CF nurse specialist13.
• Nurses caring for patients with CF in the community will be supported by a nurse specialist who has knowledge and experience of CF. This will include the disease process, the clinicaland psychological outcomes of the treatment modalities to ensure safe and effective caremeeting the minimum nursing standards of care22.
• The nurse specialist will ensure that there is close liaison between the CF team, the GP, the primary health care team, the shared care hospital and work or school22.
• The nurse specialist will ensure that advice and support is available for the management of complications associated with CF such as13: CF related diabetes
arthropathy
haemoptysis
pneumothorax
breathlessness
liver disease
osteoporosis
• The nurse specialist, in liaison with colleagues, will support and co-ordinate: home supplementary nutrition
home intravenous therapy
respiratory support
• The nurse specialist will assess and monitor the response to treatments carried out in the • The nurse specialist, in liaison with colleagues will offer psychosocial and emotional support surrounding issues of living with a genetic, life limiting disease to families and patients of allages.
• The nurse specialist will be available to offer advice, education and support to the patient, their families/carers and all staff involved10.
2.5 Issues surrounding adolescence and adulthood
Adolescence and young adulthood is a particularly difficult time for those having to deal with boththe psychological and practical burden of CF. Many treatment related issues can become a problemand the nurse specialist must be alert to problems, especially those surrounding adherence andconflict between teenager and parents23.
• The nurse specialist will be instrumental in promoting self care and responsibility in the young adult and offering support and advice to the parents24.
• The nurse specialist will liaise with schools and colleges to support continuing education9.
• The nurse specialist, in liaison with colleagues, will ensure that adolescents receive appropriate knowledge regarding issues such as25: fertility
pregnancy
contraception/safe sex
cross-infection
further education/employment
smoking/substance abuse
• The nurse specialist should use experience and knowledge to advise on the appropriate time (however long) for transition and transfer to adult care for each patient. This will include26: Liaison and communication between the paediatric and adult Specialist CF Centres about
all aspects of care, e.g. level of knowledge of CF at time of transfer.
The co-ordination of joint transition clinics, parallel care and visits to the adult Specialist
Provision of adequate information and ongoing support for patients and parents during
• The nurse specialist will allow opportunity for discussion between the patient, parents and CF team members when problems arise27.
• The nurse specialist will be available to offer advice, education and support to the patient, their families/carers and all staff involved10.
2.6 Issues surrounding the care of advanced cystic fibrosis
Although children still die, CF is becoming a disease of adulthood. However, pre-terminal grief atdiagnosis onwards must be acknowledged throughout the patient’s life. Treatment choices - thedilemma of aggressive management versus palliative care, is difficult for both the families and staff.
The pre-terminal and terminal stages must be handled with sensitivity and compassion togetherwith sound clinical judgement and involve the patient, their family and staff. • The specialist nurse will recognise the patient’s complexity of care and changing needs and will be able to offer support to the patient and their family to help them come to terms withand adapt to the changes28.
• The nurse specialist must be aware of the concerns involved with heart/lung transplantation and liver transplantation as a treatment option, these include29: the stress of waiting
the complications of transplantation
the loss of a recognisable end point
death with dignity
• The nurse specialist will advocate on the patient’s and family’s behalf. This will involve accepting new ways of coping, recognising denial, respecting their wishes and decisionsabout treatment, and allowing discussion around issues of dying30.
• The nurse specialist will ensure that the patient and family receive sufficient knowledge to make informed decisions about treatment and where possible allow flexibility of choice.
These treatment decisions will include28,31.
terminal care - hospital or home (within available resources)
continuation of enteral feeding and intravenous therapy
the options for respiratory support
pain management and symptom control
dealing with complications such as haemoptysis, liver disease, pneumothorax, trans-
plantation and management of cardio-respiratory failure bereavement management
• The nurse specialist will be able to recognise and support the healthcare team - both hospital and community based - in accepting the outcome28.
• The nurse specialist will involve other support and specialist agencies where appropriate.
• The nurse specialist will maintain ongoing liaison and communication with the primary • The nurse specialist, in liaison with colleagues will ensure that appropriate bereavement support is offered to the family both in the terminal stages and after death.
Caring for the dying patient is complex and stressful, however, the nurse specialist should recognisethat with support from the CF team and the available support network it can become a rewardingand challenging experience.
3. CONSENSUS STANDARDS OF CARE FOR
NURSING PRACTICE
These are minimum standards of nursing care and should be
adapted to meet local needs.
Standards of care for
Self-administration of intravenous therapy 3.10 Cystic fibrosis related diabetes (insulin dependant) 3.11 Transfer from paediatric to adult care 3.12 Terminal care and symptom management Consensus standards for the nursing
management of cystic fibrosis
3. 1 Diagnosis
Standard statement
Once the diagnosis has been confirmed the nurse specialist will provide a full explanation of thecondition and provide individual clinical and psychological care for each patient and their family.
Structure
Notification will be made to a recognised Specialist CF Centre of all newly diagnosedpatients.
A CF team consisting of doctors, nurse specialist, physiotherapist, dietitian, psychologistand social worker will be available.
The nurse specialist will assess and document the physical and emotional needs of thepatient/family.
The nurse specialist will support the family to enable them to cope with the emotional impactof diagnosis and allow time for discussion.
The nurse specialist will provide relevant literature to support the information being given tothe patient/family at appropriate times.
The nurse specialist will formulate a treatment plan with explanation of symptoms,implications of CF and reasons for treatment.
The patient/family will be provided with contact numbers and information about the CF team.
The patient/family will be informed of follow up arrangements and ongoing supportavailable.
The patient/family will have an assessment of their physical and emotional needs that will bedocumented.
The patient/family will have a treatment plan which includes explanation of symptoms, theimplications of CF and reasons for treatment.
The patient/family can state the names, roles and contact numbers of the CF team.
The patient/family can state when the CF team and nurse specialist will review them.
Standard Statement (Diagnosis)
Once the diagnosis has been made the nurse specialist will provide a full explanation of thecondition and provide individual clinical and psychological care for each patient and their family.
Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
State which recognised Specialist CF Centre Is there literature available for newly diagnosed CF patient/family? Is there written information stating CF teammembers and contact numbers? Is there a documented assessment of physical andemotional needs? Can the patient/family state the names, roles andcontact numbers of the CF team? Can the patient/family state what follow up carehas been arranged? Did the patient/family have the opportunity todiscuss the impact the diagnosis has made onthem? Consensus standards for the nursing
management of cystic fibrosis
3.2 Inpatient care
Standard statement
At each admission staff experienced in the management of CF and able to meet the individual’sphysiological, psychological and social needs will provide care.
Structure
A recognised Specialist CF Centre or CF Clinic will be available.
Facilities and equipment to perform lung function testing, oxygen saturation andmicrobiological analysis of sputum will be available.
A CF team consisting of a doctor, nurse, physiotherapist, dietitian, psychologist and socialworker will be available.
Ward staff will be experienced in the care of CF.
The CF patient/family will have access to a recognised Specialist CF Centre.
On admission the patient will be fully assessed, this may include lung function, height,weight, urinalysis, oxygen saturation, chest x-ray and sputum analysis where appropriate.
The patient/family will have the opportunity to discuss treatment issues with members of theCF team.
The option of home therapy will be discussed with the patient/family where indicated.
Treatment plans will be monitored and changed where indicated.
Appropriate follow up will be arranged at discharge.
The patient is assessed and a plan of care is available.
The patient/family have had the opportunity to discuss treatment options.
Treatment changes are monitored and documented.
The patient will have the correct medication and equipment on discharge.
The patient/family can state when the CF team will review them.
Standard Statement (Inpatient care)
At each admission care will be provided by staff experienced in the management of CF and able tomeet the individual’s physiological, psychological and social needs.
Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
State which recognised Specialist CF Centre thepatient is registered with? Do ward staff have experience of caring for CFpatients? Is there evidence that the patient has been assessedon admission and that results of investigations aredocumented? Is there evidence of discharge planning? Did the patient/family have the opportunity to Did the patient/family have the opportunity todiscuss the option of home therapy? Did the patient have the correct medication andequipment on discharge? Can the patient/family state what follow up carehas been arranged? Consensus standards for the nursing
management of cystic fibrosis
3.3 Outpatient care
Standard statement
At each routine outpatient visit a multi-disciplinary team experienced in the management of CFand able to meet the individual’s physiological, psychological and social needs will provide care.
Structure
Facilities and equipment to perform lung function, oxygen saturation, weight, height andsputum/cough swab microbiology will be available.
Growth parameters will be recorded where appropriate.
A multi-disciplinary team, specialising in CF and consisting of a doctor, nurse specialist,physiotherapist, dietitian, social worker and psychologist will be available.
The patient/family will have access to a recognised Specialist CF Centre.
Written information regarding the roles, names and contact numbers of the CF teammembers are given to the patient/family.
At each outpatient visit the patient will have their FEV1, FVC, SaO2, height, weight and asputum/cough swab specimen taken for analysis where appropriate.
At each outpatient visit the patient/family will have the opportunity to discuss their carewith a doctor, nurse specialist, physiotherapist, dietitian, social worker and psychologist.
The patient will have an Annual Review performed.
Outcomes
The patient/family can name to which recognised Specialist CF Centre that they have access.
The patient/family has the names and contact numbers of the CF team.
The patient has their FEV1, FVC, SaO2, height, weight and a sputum/cough swab specimentaken for analysis at each visit.
The patient has a documented Annual Review.
A doctor, nurse specialist, physiotherapist, dietitian, social worker and psychologist withknowledge of CF are available to see the patient/family during their visit where appropriate.
Standard Statement (Outpatient care)
At each routine outpatient visit care will be provided by a multi-disciplinary team experienced inthe management CF and able to meet the individual’s physiological, psychological and social needs.
Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Can staff state where the patient’s recognisedspecialist CF care takes place? Can staff state the names of CF team that areinvolved in the patients care? Is there any written information stating CF teammembers and contact numbers? Is there evidence that the patients FEV1, FVC,SaO2, height, weight and sputum/cough swabspecimen were performed and recorded? Is there evidence that the patient has had anAnnual Review performed? Can the patient/family state the names of theindividual members of the CF team and how tocontact them? Did the patient/family have an opportunity todiscuss their care with a doctor, nurse specialist,physiotherapist, dietitian, social worker andpsychologist during their visit? Consensus standards for the nursing
management of cystic fibrosis
3.4 Community care
Standard Statement
The patient/family will have access to specialist advice, support and direct supervision as required,enabling the individual to meet their health needs in the community setting.
Structure
Availability and access to a Specialist CF Centre and multi-disciplinary team for direct careor as a resource to local services. Resources and equipment to facilitate safe and effective home care will be available.
Information regarding local government guidelines/resources for community care areavailable.
The CF patient/family will have access to care and advice from a Specialist CF Centre.
The patient/family are given the opportunity to discuss community care and together withthe specialist nurse a plan of care is formulated and re-assessed on a regular basis.
Relevant teaching programmes and instruction will be implemented prior to commencementof home care.
The patient/family are given contact numbers to cover the 24 hour period for support andadvice.
Drugs, equipment and written information are available for the patient at the commencementof home care and throughout its course.
Continued monitoring and supervision is carried out to ensure the safe delivery of andeffective treatment/care in the community.
Outcomes
The patient/family can name which Specialist CF Centre they attend or have shared care with.
The patient/family have a plan of care.
The patient/family feel competent and confident to continue with communitycare/treatment as outlined in the plan of care. The patient/family can state who to contact for help and advice covering the 24 hour period.
The patient/family have the equipment, drugs and written information to enable plan of careto be implemented.
The patient/family acknowledge that episodes of continuing care are safe, effective andappropriately supported.
Standard Statement (Community care)
The patient/family will have access to specialist advice, support and direct supervision as required,enabling the individual to meet their health needs in the community. Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Is there information available on local governmentguidelines for community care? Can the patient/family state whether Specialist CFCentre care or CF Clinic care is received? Does the patient/family feel competent andconfident to undertake treatment plan at home? Can the patient/family state the names and contactnumbers covering 24 hour period for support andadvice? Did the patient/family have instruction/educationprior to commencement of home care? Did the patient/family have the correctequipment, drugs and written information toenable to undertake treatment at home? Did the patient/family feel supported toundertake care effectively and safely at home? Consensus standards for the nursing
management of cystic fibrosis
3.5 Nebuliser therapy
Standard statement
The patient receiving nebulised medication will understand the importance of the therapy and howto use and care for the equipment.
Structure
A CF nurse specialist and/or physiotherapist will be available.
The nurse specialist will have knowledge of the medication.
The following resources will be available: compressor
appropriate nebuliser
The patient/family is provided with appropriate knowledge in the therapy and in the use andstorage of the equipment.
Together with the patient/family, the nurse specialist and/or physiotherapist assesses andformulates an appropriate plan of action to ensure safe practice.
The patient/family will be provided with the appropriate nebuliser and compressor deliverysystem and ancillaries.
The patient/family will be provided with contact names and numbers for advice and forproblems associated with nebuliser and compressor system.
The patient/family will be advised on frequency and method for maintaining compressor.
Outcomes
The patient/family has a plan of care to meet their individual needs and can state theproblems associated with nebuliser therapy.
The patient/family are confident at administrating nebuliser therapy.
The patient/family can state who to contact for advice or problems.
The patient has the appropriate delivery system and ancillaries for their needs.
The patient/family can state frequency and method of maintaining the compressor.
Standard Statement (Nebuliser therapy)
The patient receiving nebuliser therapy and their family will be taught how to administermedication safely and effectively.
Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Is there a nurse specialist available with experienceof nebuliser therapy? Can the patient/family demonstrate how to usenebuliser equipment correctly and safely? Can the patient/family state names and contactnumbers with regard to nebuliser therapy advice? Has the patient/family the correct supplies toadminister nebuliser therapy at home? Can the patient/family state frequency andmethod of maintaining the compressor? Consensus standards for the nursing
management of cystic fibrosis
3.6 Care of a central venous access devices
Standard statement
The care of a central venous access device (CVAD) is managed safely by a suitably trained person toprevent complications.
Structure
An experienced CF nurse specialist is available for advice.
Training programmes and assessment processes for all persons caring for the CVAD will beavailable.
Supporting literature will be available.
A CF nurse specialist with knowledge of CVAD will be available to support and advise onmanagement.
Teaching will be available to all the patient/family and relevant staff.
A person/persons will be identified and trained to undertake routine flushing of the CVAD.
Appropriate literature will be readily available to support teaching.
Action will be taken on all reported complications and problems relating to the CVAD.
The patient/family can state who to contact with regard to the CVAD.
Competency of accessing and managing the CVAD will be recorded on all persons.
All those trained in CVAD management will state complications and be able to problemsolve.
The patient/family will be able to state who undertakes routine flushing of the CVAD.
The patient/family will have literature relating to the management of CVAD.
Standard Statement (CVAD)
The care of a central venous access device (CVAD) is managed safely by a suitably trained person toprevent complications Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Is there a training and assessment process availablefor caring for CVAD? Can staff state complications of CVAD andproblem solve? Is there literature to support teaching available? There is a record of all those trained to access andmanage CVAD? Can the patient/family state who to contact foradvice with regard to the CVAD? Can the patient/family state complications ofCVAD? Can the patient/family state who performs routineflushing of CVAD? Did the patient/family have literature relating tothe management of the CVAD? Consensus standards for the nursing
management of cystic fibrosis
3.7 Self-administration of intravenous therapy
Standard Statement
The patient/family participating in self-administration of intravenous (IV) drugs at home will beable to administer their own drugs safely, ensuring minimal disruption to the individual's life style.
Structure
The registered nurse has accreditation in IV therapy and has access to IV policy and UnitedKingdom Central Council (UKCC) Scope of Practice.
The patient/family is provided with the following resources in the administration ofIV therapy: assessment criteria
medication as prescribed
ancillaries
appropriate sized Sharps bin
information booklet with drug regime and contact numbers
Together with the patient/family (and the community team when available), the specialistnurse assesses and formulates an appropriate individual plan of action to ensure safe practice.
The patient/family are given the opportunity to discuss the option of self-administration ofIV drugs at home, so that they can make an informed decision that is reversible.
A teaching plan is formulated to meet the individual's needs and requirements.
A period of supervision/instruction will be carried out to meet the needs of the individual.
Patient assessment is carried out according to set criteria.
The patient/family are given contact numbers to cover 24 hour period. The patient/familyare contacted during IV course or within 72 hours of discharge when carrying out self-administration for the first time.
Medication, equipment and information booklet are available for the patient whencommencing each course of self-administered IVs at home.
The patient/family has a plan of care to meet individual needs.
The patient/family are competent at self-administration of IV therapy.
The patient/family can state who to contact during 24 hour period.
The patient/family self-administering IV drugs were contacted during home IV course orwithin 72 hours of discharge if self administering home IVs for the first time.
Response and compliance with treatment and any problems occurred are recorded.
The patient received the correct supplies on discharge.
Patient correctly disposes of the sealed Sharps bins.
The patient did not acquire IV related sepsis.
Standard Statement (Self-administration of intravenous therapy)
The patient or family participating in self-administration of intravenous drugs at home have theskills and support to administer their own therapy.
Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Is there evidence that the patient/family have beenformally assessed in the administration ofintravenous medication? Is there evidence that the patient’s response,compliance to treatment and any problems thatmay have occurred during treatment beenevaluated? Was the patient/family given the opportunity todiscuss the option of self-administration ofintravenous medication at home prior todischarge? Does the patient/family know who to contactduring a 24 hour period if there are any problemswhen administering the medication at home? Was the patient/family contacted (within 72 hoursif it was a first home IV course) during theircourse of treatment? Did the patient/family receive the correct supplyof medication and equipment to complete the IVcourse? Did the patient/family have written instructionsregarding the medication regimen? Does the patient/family know how to dispose ofthe sealed Sharps bin? Consensus standards for the nursing
management of cystic fibrosis
3.8 Enteral feeding
Standard Statement
The patient/family administering enteral feeding at home will be able to manage the gastrostomy ornaso-gastric tube and administer their feed safely ensuring minimal disruption to the individual’slife style.
Structure
A nurse specialist and dietitian will be available for all patients requiring enteral feeding.
The following resources will be available: replacement tubes (where appropriate)
ancillaries
Information regarding feeding regime and contact numbers.
The nurse specialist will ensure that the patient is assessed for an appropriate education plan.
The patient/family are given the opportunity to discuss enteral feeding at home.
A period of supervision/instruction will be carried out to meet the needs of the individualsconcerned.
The patient/family will be provided with contact names and numbers.
Assessment (height, weight, body mass index where appropriate) of the patient’s nutritionalstatus will be carried out regularly.
Feed and equipment will be available for the patient.
The nurse will ensure that the patient does not acquire any complications associated withenteral feeding.
An assessment (height, weight, body mass index where appropriate) and record of progress isdocumented.
The patient/family has a plan of care to meet their individual needs.
The patient/family are confident at administrating the feed.
The patient/family can state who to contact.
The patient has the correct supplies and feed.
Standard Statement (Enteral feeding)
The patient/family administering enteral feeding at home will be able to manage the gastrostomy ornaso-gastric tube and administer their feed safely ensuring minimal disruption to the individual'slife style.
Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Is there a nurse specialist and dietitian experiencedin enteral nutrition? Is there a recorded assessment that includes heightand weight? Did the patient/family have the opportunity todiscuss enteral feeding at home? Can the patient/family demonstrate how toadminister feed confidently? Have the patient/family been given the correctsupplies to administer feed at home? Can the patient/family state a name and contactnumber with regard to enteral feeding? Did the patient remain free of any complicationsassociated with enteral feeding? Consensus standards for the nursing
management of cystic fibrosis
3.9 Oxygen therapy
Standard statement
The patient receiving long term oxygen therapy (LTOT) and their family will be taught how toadminister oxygen safely and effectively.
Structure
The CF nurse specialist and/or physiotherapist will be available.
The following resources will be available: oxygen (cylinders, concentrator or liquid oxygen)
nasal cannulae or mask
3. Information regarding flow rate, hours of usage and contact numbers.
The patient will be assessed to determine flow rate and hours of usage (arterial blood gasesand oxygen saturation measurements31).
Together with the patient/family, the nurse specialist and/or physiotherapist assesses andformulates an appropriate plan of action to ensure safe practice.
The patient/family will be provided with the appropriate oxygen delivery system andancillaries.
The patient/family will be provided with contact names and numbers for advice and forproblems associated with oxygen delivery system.
Outcomes
The patient has an assessment documented (arterial blood gases and oxygen saturation).
The patient/family has a plan of care to meet their individual needs and can state thecomplications associated with oxygen delivery.
The patient/family are confident at administrating oxygen therapy.
The patient/family can state who to contact for advice or problems.
The patient has the appropriate delivery system and ancillaries for their needs.
Standard Statement (Oxygen therapy)
The patient receiving long term oxygen therapy (LTOT) and their family will be taught how toadminister oxygen safely and effectively.
Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Is there a nurse specialist available with experience Is there a documented assessment that includesarterial blood gases and oxygen saturation? Can the patient/family demonstrate how to useoxygen therapy correctly and safely? Can the patient/family state oxygen flow rate andhours of usage? Can the patient/family state names and contactnumbers with regard to oxygen therapy advice? Have the patient/family been given the correctsupplies to administer oxygen at home? Consensus standards for the nursing
management of cystic fibrosis
3.10 Cystic fibrosis related diabetes (insulin dependant)
Standard statement
The patient with cystic fibrosis related diabetes (CFRD) will be taught to manage their condition,how to obtain diabetic control and how to prevent associated complications.
Structure
A diabetologist, diabetic nurse specialist and dietitian will be available for all patients newlydiagnosed with CFRD.
The following resources will be available: blood glucose monitoring equipment
insulin and pens
CFRD plus other relevant literature on diabetes will be available
The nurse specialist will ensure that the patient is assessed for an appropriate education plan.
A diabetologist and diabetic nurse specialist will liaise with the CF team.
The patient will be supervised and instructed regarding: blood glucose monitoring
injection sites and techniques
disposal of equipment
prescribed insulin regimens
hypo/hyperglycaemic management
The patient/family will be provided with contact names and numbers of the CF and diabeticteams.
The patient will have a diabetic annual assessment.
Outcomes
The patient/family have access to a diabetologist, diabetic nurse specialist and dietitian withknowledge of CFRD.
The patient with CFRD has a documented diabetic annual assessment.
The patient can demonstrate how to monitor their blood glucose level, inject insulin andmanage hypo/hyperglycaemia.
The patient/family has literature relating to CFRD.
Standard Statement (Cystic fibrosis related diabetes (CFRD)
The patient with CFRD will be taught to manage their condition, how to obtain diabetic controland how to prevent associated complications Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Is there a diabetologist, diabetic nurse specialistand dietitian available? Can staff members state how the diabetic team andCF team liaise? Is there a documented education assessment? Is there a documented diabetic annual assessment? Can the patient/family demonstrate how tomonitor blood glucose level, inject insulin andmanage hypo/hyperglycaemia? Can the patient/family state names and contactnumbers with regard to CFRD? Does the patient/family have literature relating tothe management of CFRD? Does the patient/family have the correctequipment to control and monitor CFRD? Consensus standards for the nursing
management of cystic fibrosis
3.11 Transfer from paediatric to adult care
Standard statement
Each patient/family will receive continued support from the multi-disciplinary CF teamappropriate to their individual needs during transition from paediatric to adult care.
Structure
Information regarding recognised adult Specialist CF Centres will be available.
The CF team consisting of a doctor, nurse, physiotherapist, dietitian, psychologist and socialworker will be available at the recognised adult Specialist CF Centre.
The patient will be transferred from the paediatric Specialist CF Centre to a recognised adultSpecialist CF Centre.
A flexible approach to the age at transfer will be adopted according to individual needs.
Transition to adult care will be discussed and planned with the patient/family at theappropriate time and a date for transfer agreed.
The CF nurse specialist will act as a key person to liaise between the paediatric and adultSpecialist CF Centres during the transition period.
The patient/family will have the opportunity to visit the adult Specialist CF Centre on asocial basis.
Contact names and numbers of the adult CF team will be provided.
A clinic appointment with the adult CF team will be offered prior to the final paediatricappointment.
The paediatric CF team will promote autonomy of care prior to transfer.
A date for transfer is agreed between the patient/family, the paediatric CF team and the adultSpecialist CF Centre.
The patient/family are able to outline the plan for the process of transition.
The patient/family will have been offered the opportunity to visit the adult Specialist CFCentre prior to transfer.
The patient/family has the names and contact numbers of the adult CF team.
The patient will have an outpatient appointment with the adult Specialist CF Centre.
Standard Statement (Transfer from paediatric to adult care)
Each patient/family will receive continued support from the multi-disciplinary CF team appropriateto their individual needs during transition from paediatric to adult care.
Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Can staff state the adult Specialist CF Centrewhere the adolescent's care will be transferred? Can staff state the key person who will liaisebetween the paediatric and adult Specialist CFCentres? Does the patient and their family know when theiragreed date of transfer is? Has the transition to adult care been discussedwith the patient and their family? Did the patient and family have the opportunityto visit the adult Specialist CF Centre on a socialbasis? Have the patient and family been given names andcontact numbers of the CF adult team? Has a clinic appointment been made with the adultCF team prior to the patient’s final paediatricappointment? Consensus standards for the nursing
management of cystic fibrosis
3.12 Terminal care and symptom management
Standard statement
Patients in the terminal stages of their disease will receive support, symptom control and careappropriate to their individual needs to allow them to die with dignity.
Structure
A CF nurse specialist will be available.
Appropriate support services will be available.
Together with the patient/family the CF nurse specialist assesses and formulates anappropriate plan of care.
The patient/family will have the opportunity to choose home or hospital based terminal care.
This arrangement will be flexible with changing needs.
Regular assessment and monitoring of symptoms will be carried out and managementplanned accordingly.
The patient/family will be kept informed of changes and have the opportunity to expresstheir feelings and needs.
The nurse, in conjunction with other experienced professionals, will provide: management of pain and symptoms (table 1)
a support structure to the patient/family during end stage and the period following death
education and support for colleagues involved in the care.
Bereavement support will be identified and offered.
The patient/family have a plan of care that meets their needs.
The patient/family’s decision for hospital or home care is recorded along with any managementchanges.
The patient/family can state who to contact for support and advice.
The family will state that all relevant equipment and medication is available to providesymptom control.
A support service for staff is available.
Bereavement support is organised according to the wishes of the family.
SYMPTOM CONTROL
Suggested approaches
Pharmaceutical
Other Measures
Management
Standard Statement (Terminal care)
Patients in the terminal stages of their disease will receive support, symptom control and careappropriate to their individual needs to allow them to die with dignity.
Key to table: S = structure, P = process, O = outcome
Target Group
Audit Criteria
Is there a CF nurse specialist available to advise onterminal care? Can staff identify what support is available? Is there written information stating CF teammembers and contact numbers? Can staff state what equipment and medication isavailable for symptom control? Is there an assessment of symptoms and needsrecorded? Has the option of home or hospital care beendiscussed with the patient/family and documented? Have the bereavement needs of the family beenassessed and documented? 4. REFERENCES
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Madge SL, Khair K. Multi-disciplinary teams in the UK - problems and solutions. Journal of Pediatric Nursing 2000; 15:131-134.
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Source: http://www.cfnurses.net/UK%20nursing%20standards.pdf

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