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Psychosocial Needs of Families of Palliative Care Patients

Psychosocial Needs of Families of Palliative Care Patients. Aim of the Session. To provide insight into the psychosocial issues which may affect families of patients receiving palliative care . Learning Outcomes. By the end of this session the participants will be able to;

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Psychosocial Needs of Families of Palliative Care Patients

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  1. Psychosocial Needs of Families of Palliative Care Patients

  2. Aim of the Session To provide insight into the psychosocial issues which may affect families of patients receiving palliative care

  3. Learning Outcomes • By the end of this session the participants will be able to; • Explain why it is important to assess families’ needs • Describe the common issues which affect families • Outline where support can be accessed

  4. Palliative care has been defined by the WHO as “the active total care of patients whose disease is not amenable to treatment. Control of pain, of other symptoms and of psychological, social and spiritual problems is paramount as is the best quality of life for patients and their families”

  5. Family? Always relatives ?Always human?!!! Woof!

  6. ‘Whilst some families will be drawn closer together by the stress they are facing , making relationships stronger than ever, in other families the emotionally charged situation of a terminal illness can cause conflicts to surface, adding to the family’s general distress’ (McIntyre, 1996, p204)

  7. Families “ The family can be a source of strong support or chronic stress, it can nurture or destroy, it can promote wellness or illness…..effective assessment, care planning and care delivery rests on the recognition that the family is the client too” ( Epilopoulous,1984)

  8. Difficult times for families The varying ability of the patient and family to adjust to transitions in disease is heightened at particular points in the course of the disease and these include, • Diagnosis • Commencement of treatment • Recurrence of disease • Transition from curative to supportive therapies • Advanced disease • End of life care

  9. Why is it important to support relatives at this time? Because it may have an impact on health and their bereavement experience

  10. What do we know affects family health? • Experiences of Hospital Care –good and not so good • Socioeconomic factors • Factors within the individual –how does this person usually cope during stressful times and which coping strategies have they used in the past? • Feeling valued as a part of the caring team • Changes in life/ hopes for future

  11. What can happen? Family members can play a central role in managing all aspects of the patients care which can become overwhelming and very stressful, affecting all aspects of their quality of life. They are at risk of developing a variety of psychological and physical problems, including anxiety, depression, fatigue and health problems

  12. What helps • Provision of information • Practical help with care provision • Clarification about the patients care or symptoms • Provision of emotional and spiritual support • Structured assessment

  13. Case Study • Mrs M is a 79yr old lady who has end stage heart failure and chronic lung problems. She has been ill for many years but on this admission to hospital she has not responded to usual treatment. The cardiologists now feel it is inappropriate to continue with this and have explained the aim now is for comfort. • Mrs M has a partner of the last 5 yrs , whom she met at the bowling club. He is living in her house at present to care for her dog. He is very emotional and tearful each time he visits • Mrs M ‘s daughter is newly retired and childminds full- time for her grandchildren • Mrs M is asking to go home to die and her son who is in contact daily by phone from Canada agrees with this

  14. Case Study • 40 yr old lady admitted to surgical ward with abdominal pain and vomiting. Bowel ca 5 yrs ago, now bowel obstruction- no surgery possible. • Pt is Turkish asylum seeker ( in Scotland 3 yrs) and is in danger of deportation • Husband and pt speak little English and staff have been using 16yr old daughter to interpret . Husband rarely visits as works long hours( ?illegally). Daughter on college course but has had to take time off. Spends her time in ward reading magazines • Daughter says her 10yr old sister is not aware of mothers cancer diagnosis and is being cared for by friends. She says her family are hoping for a cure and are angry that oncologists here have no treatment to offer. Friends are contacting doctors on the internet re new drugs

  15. Case study Pt is a 10yr old boy born with a genetic disorder which has short life span. He has amazed doctors with his fight for life and living but is now entering the terminal phase of his illness. He has a younger brother of 6yrs who also has the same condition. The parents marriage split but mum is remarried and pregnant with a baby girl. The paternal grandparents still have contact with the boys and are very close to them. The doctors have explained pt is dying to the family and asked where they would like him to be cared for

  16. Where can support be accessed? • Medical and nursing staff on ward • AHP- Physiotherapist, occupational therapists,SALT • Chaplaincy • Interpreting services • GP • Carers support agencies • Welfare Rights officers • Social work • Family/child support services/protection officers • Internet resources for families • Specialist palliative care

  17. Relevance of this for Practice? Relatives’ stress is reduced by; • Seeing the patient comfortable with symptoms relieved • Getting regular updates from nurses and doctors • Carers who know and are known to the patient and their family • A caring and relaxed manner of the staff • Having a private place to rest that is close to the patient • Support of family and close friends • Access to social, pastoral and specialist support (McIntyre,1996)

  18. “ My wife has been diagnosed with a disease but it’s the devastation of that disease that we live each day…. Bearing witness to illness is one thing. Bearing witness to pain is quite an other. I feel I am becoming the patient on many levels. I, too, cannot sleep. I am anxious and depressed and tearful. I am attempting to be provider, spouse, father and mother. As I measure medication I shudder at the reality that I am pouring a dose of morphine for my wife. There is something surreal about this way of being that now fills my daily life. I am not the patient. I am the witness. ( Ferrell,B 2005)

  19. References and Sources of further information • Epilopoulous,C (1984) Health Assessment of the Older Adult. California:Addison-Wesley • Callaghan,H.E(2003) Families dealing with advanced heart failure.Critical Care Nursing Vol26,3,pp230-243 • McIntyre, R. ( 1996)Nursing support for relatives of dying cancer patients in hospital :improving standards by research. Unpublished PhD Thesis. Dept of Nursing and Community Health, Glasgow Caledonian University, Glasgow. • www.macmillancancersupport.org.uk

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