Psychosocial Aspects of Care

1
Psychosocial Aspects of Care

• Prof Alan R Watson
• Children Young Peoples Kidney Unit
• Nottingham University Hospitals
• Professor of Paediatric Nephrology
• University of Nottingham

2

• Treatment is INDIVIDUALISED for each child and
  family

• Medical prescription

• Nutritional prescription

• Psychosocial support

3
The Team Approach
4
Coping With Chronic Illness

• Information
• Self management skills
• Social support

5
Provision of Information to Patients and Their
Families

• Reduces anxiety and stress
• Allows families and child to plan for outcomes
• Enables decision-making and informed consent
• Enhances parent and child satisfaction
• Improves compliance with treatment
• Watson AR. Meeting the information needs of
  children and their families. Clinical Paediatric
  Nephrology 2003, p465

6
Information Needs

• Most information needs are for
• Detailed tests results
• New information about the condition
• Their childs future social development
• Over a 2-year period information needs declined
  with regular contact with team members
• Those patients who have a lower socio-economic
  status were associated with higher information
  need scores

7
Information and Education

• Verbal
• Written
• Tape recording
• Videos
• CD ROMs
• Parent groups and contacts

8
Self Management Skills

• Following the dialysis prescription with setting
  up and stripping down the automated PD machine
  twice a day or 4 CAPD bag changes
• Monitoring of weight, blood pressure, temperature
  and ultrafiltrate
• PD catheter exit site dressing change 2-3 times a
  week
• Nasogastric tube or gastrostomy site care in
  young children
• Following the nutritional prescription with
  supplements and/or enteral feeding
• Administration of medications and injections
  including Erythropoietin
• Liaison with hospital, nursery/school or college
• Arranging delivery and storage of supplies
• Administration of antibiotics and/or heparin
  during peritonitis

9
Other Sources of Stress

• Organisation of time
• Financial strains
• Marital stress
• Social isolation
• Additional medical/surgical problems in their
  child
• Educating others about the childs condition
• Changes in support personnel at the hospital

10
Stress and burden of care in families with
children commencing renal replacement therapy.
Watson AR. Advances in Peritoneal Dialysis
199713300

• 38 patients (26 males) started renal replacement
  therapy (0.2 13.5yrs)
• Mean stress anxiety and depression scores were
  higher in mothers and fathers
• Scores higher in parents with children gt10yrs
  compared to those lt10 years
• Families with a high initial burden of care
  assessment score show a positive correlation with
  maternal stress and anxiety scores
• Patients and families with a low BCA score had
  better growth performance

11
Burn-Out

• Defined as suffer physical or emotional
  exhaustion
• Watson A, Gartland C. In Fine et al (eds)
• CAPD and CCPD (2nd ed) 1998p491

12
Social Work Support

• Loss of income and allowances
• Transport costs
• Sibling issues
• Family relationships
• Referral to psychologist in clinic or joint home
  visit

13
Respite Care for Prevention of Burn Out

• Night off dialysis if possible
• Babysitting (charity funded)
• Respite care nurses for daytime help (charity
  funded)

14
Holiday Support

• Organised by unit
• Charity funded caravan
• Organisation with foreign travel

15
Youth Work Support

• Employment of Unit Youth Worker
• Advocacy for Young People
• Youth Work Project
• Residentials for Transition and Siblings

16
Rings of Support
Named Nurse Social Worker Dietitian Home Care
Nurse Babysitters Psychologist
Child Family
Paediatric Renal Team
Extended Family
Community Paediatric Renal Nurse Hospital Teacher
Local Community Paediatric Nurses District Nurse
Nursery/School General Practitioner