Palliative Nursing Care of Children and Young People

Palliative Nursing Care of Children and Young People

Paediatric Nursing Associations of Europe Network

Palliative nursing care of children and young people

We believe thatevery child and young person has the right to expect good palliative care to be provided whether it is in a hospital setting or in a home environment. All children and young people with life-limiting and terminal illness should receivethe care they need.

In 2007 the document “IMPaCCT: standards for paediatric palliative care in Europe” was published in the European Journal of Palliative Care[1]. The key principles of these standards will be our guideline to undertake a survey across Europe. We want to identifyif the minimum standards of palliative nursing care are implementedacross Europe as well asto identify good practice. When we discuss paediatric palliative care we refer to the definition of the World Health Organization(WHO 1998 & 2002) which was adopted by IMPaCCT (see attached).

We would like you to answer the questionnaire using the IMPaCCT standards for paediatric palliative care in Europe together with your national standard of palliative care (if available) when answering the questions.

The survey is being sent to Paediatric Nursing Associations/Nursing Associations with a request to complete and return the questionnaire.

The aim is to establish good practice recommendations to underpin the palliative nursing care of children and young people in all health care settings.

We would be grateful if you could complete and return this questionnaire by 30th August 2016. An electronic version of the questionnaire can be found at

Please return completed forms to

Fiona Smith,

Professional Lead in Children and Young People’s Nursing

Co-ordinator of Paediatric Nursing Associations of Europe Network

Royal College of Nursing,

20 Cavendish Square

London

United Kingdom

Tel: +44 (0)20 7647 3736 email:

Thank you for your co-operation.

Fiona Smith, Professional Lead in Children and Young People’s Nursing, Royal College of Nursing, United Kingdom

Please complete Section A in full before proceeding to Section B

Section A

Country: ……………………………………………………………………….

Title of Professional Nursing Organisation:

…………………………………………………………………………………………………………

Name of person completing questionnaire:

…………………………………………………………………………………………………………

Address:

Telephone number [incl. international dialling code]:

Fax number [incl. international dialling code]:

Email address: … ………………………………………………………….

If possible please also include a printed professional contact card containing relevant contact details

Section B

Organisation of services

Question 1:Does your country have national guidelines concerning paediatric palliative care?

Yes[ ]No[ ]

Comments:

Question 2: Does your country use the WHO definition of paediatric palliative careas adopted byIMPaCCT ? (page 2)

Yes[ ]No[ ]

Comments:

Question 3: Does your country have written guidelines/ standards on the 3 levels ofpaediatric palliative care as described by the Association for Children with Life-threatening or Terminal conditions and their Families (ACT)?(IMPaCCT pages 3-4)

Yes[ ]No[ ]

Comments:

Question 4: IMPaCCT recommends minimum core standards for Europe in the provision of paediatric palliative care. Does your country follow core standards in the provision ofpaediatric palliative care? (IMPaCCT page 4)

Yes[ ]No[ ]

Question 5: If your country has implementedelements ofthe unit of care as described by IMPaCCT(page 4)please tick below the elements which have been implemented.

  • The unit of care is the child & family. Family is defined as those who provide physical, psychological, spiritual and social comfort to the child, regardless of genetic relationship[ ]
  • A full range of clinical and educational resources are available for the child and family, in a format that is appropriate to age, cognitive and educational ability and within a suitable cultural context. [ ]
  • The child and family are included in identifying the needs and priorities for care, once given as much information as desired regarding disease and treatment options.[ ]

Comments:

Question 6: Does your country have paediatric palliative care teams as described in IMPaCCT? (page 4 )

Yes[ ]No[ ]

Question 7:If a paediatric palliative care team provides care in your country, please tick below the elements that are provided

  • The care team recognises the individuality of each child and family and upholds their values, wishes, beliefs, unless this exposes the child or carers to avoidable harm. [ ]
  • The palliative care team has sufficient expertise to address the physical, psychological, emotional, spiritualand social needs of the family. [ ]
  • The skills and services provided include a physician, nurse,social worker, child therapist or psychologist and a spiritual adviser.[ ]
  • Professional resources from the child´s own community are utilised if appropriate.[ ]
  • Expert paediatric palliative care support and advice are available to the child and family 24 hours a day, 365 days a year.[ ]
  • The care team ensures continuity of care at home, in the hospital and in a hospice through planning, sharing strategies and objectives.[ ]
  • The direct caretakers provide psychosocial support and supervision. [ ]

Comments:

Question 8:If you answered NO to question 6, which professionals are involved in the paediatric palliative care team?

(Please describe)

Question 9:In your country is one professional from the paediatric palliative care team identified as the family’s care co-ordinator or key worker?(IMPaCCT page 4)

Yes[ ]No[ ]

Comments:

Question 10:In your country are the nurses that providepaediatric palliative care for ill children paediatric nurses[2]?(IMPaCCT page 6)

Yes[ ]No[ ]

Comments:

Question 11:Do the nurses that provide paediatric palliative careto children and young people in all settings (hospital, hospice, at home)havespecialised qualifications? (IMPaCCT page 5)

Yes[ ]No[ ]

(Please describe)

Paediatric Palliative care management

IMPaCCT describes that every child should have access to professional, pharmacological, psychological and physical managementof pain and other symptoms (IMPaCCT page 4).

Question 12:In your country are there writtenguidelineson pain andsymptom management as described in IMPaCCT? (pages 5-6)

Yes[ ]No[ ]

If you answered NO please describe:

Question 13: Are the symptoms of every child recognised and assessed as described in IMPaCCT ?(page 5)

Yes[ ]No[ ]

If you answered NO please describe:

Question 14:In yourcountry are there protocols for pain and symptom management within paediatric palliative careso that all children and young people can get appropriate treatment to achieve an acceptable level of comfort? (IMPaCCT pages 5-6)

Yes[ ]No[ ]

If you answered NO please describe:

Ethical and legal rights of children in paediatric palliative care

Question 15:Does every child in yourcountry have equal access to paediatric palliative care? (IMPaCCT page 5)

Yes[ ]No[ ]

If you answered NO please describe:

Question 16:In your country does the government fund paediatric palliative care services including all care and equipment needs? (IMPaCCT page5)

Yes[ ]No[ ]

If you answered NO please describe:

Question 17:In your country is paediatric palliative care evaluated to see if the care is in the best interest of the child? (IMPaCCT page 6)

Yes[ ]No[ ]

Comments:

Question 18: If you stated YES in question 17who evaluates the best interest of the child?

Please describe:

IMPaCCT alsodescribes standards for communication and decision making.

Question 19: In your country is there a structured written standard for communication and decision making?( IMPaCCT page 6)

Yes[ ]No[ ]

Question 20: If you answered NO in Question19:who evaluates communication and decision making?

please describe:

Question 21: If you answered YES to question 19, please tick the elements below that are included in the standard in your country concerning communication and decision making.

  • An honest and open approach is the basis of all communication and is sensitive and appropriate to the child’s age and understanding.[ ]
  • Parents are acknowledged as the primary caretakers and are centrally involved in the care and decisions involving their own child. [ ]
  • Information is provided for the parents, for the child and for the siblings according to age and understanding. The needs of other relatives are also addressed.[ ]
  • Every child is given the opportunity to participate in decisions effecting his or her care, according to age and understanding.[ ]
  • Situations posing a high risk of conflict are anticipated and procedures for early communication, therapeutic interventions or ethics consultation are established. [ ]
  • Every family is given the opportunity of consultation with a paediatric specialist who has particular knowledge of the child’s condition, including the treatment and care options available. [ ]

Comments:

Question 22:In your country is there a structured programme within the paediatric palliative careprovided to reach the goals of care management, respite care and family support as described in IMPaCCT? (IMPaCCT pages 6-7)

Yes[ ]No[ ]

If you answered NOplease describe:

Question 23: Do you find that the paediatric palliative care in your country meets all the written standards of IMPaCCT?

Yes[ ]No[ ]

If you answered YESplease describe:

Comments:

Please advise of any planned future developmentsin paediatric palliative care in your country or further comments below if you wish

Thank you for your time and co-operation

Please return completed forms to:

Fiona Smith, Professional Lead in Children’s and Young People’s Nursing at the Royal College of Nursing, 20 Cavendish Square, London, United Kingdom, Tel: +44 (0)20 7647 3736 email:

1

[1] IMPaCCT: standards for paediatric palliative care in Europe. European Journal of Palliative care 2007; 14(3): 109-114
(also available from last searched for 26th April 2016)

[2]

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