Supplement 2: Example of the intervention delivery for one of the carer participants.
Problem No / Date / Problem identified / Assessment / Plan1 / 16/10/2013 / Section 2-Caring for your self
Emotional Distress related to diagnosis and prognosis / Crying during telephone assessment. She had not slept well. Has felt overwhelmed and has been crying a lot. Has tried to hide it from her husband to not burden him. / Asked if she would like me to organize a referral for psycho-oncology. Called Cancer Nurse Coordinator (CNC) to organize.
15/11/2013 / Spoke to carer and she saw Psycho-oncology group this week. She has made another appointment as helpful.
18/12/2013 / Still trying not to cry during interview. Not looking forward to Christmas. / Has appointment with psycho oncologist in new year.
22/1/14 / Appointment cancelled as patient unwell. Carer still sounds teary on phone. / Have called Cancer Council to find out about local support group. Called Carer back and provided number of coordinator in her area. She said she would call them.
05/03/2014 / Carer has been to see a local counsellor.
Sounds happier and more able. Has also attended a carer’s course.
03/04/2014 / Patient has had disease progression and commenced Avastin. Carer sounds calm, but teary occasionally.
Also having Reiki therapy with the patient. / Still having fortnightly counselling with local person and she is happy with this.
12/05/2014 / Patient continues to deteriorate ECOG of 3. Hospitalized for aspirational pneumonia also has reoccurrence of anal sinus. Bed bound, doubly incontinent. Carer unable to get to appointments. Needs respite organized. / Have called CNC.
14/05 called carer - she has still not heard back from anyone re respite. Will follow-up today.
2 / 18/12/2013 / Section 6- Dealing with treatment
Fatigue –ongoing -since chemo radiotherapy slightly improved. / Fatigue still a problem
Currently has poor balance
Next lot of chemo boxing day cycle 2. / Continue to monitor. Carer has purchased a pedal pusher so he can exercise sitting down.
22/01/2014 / Has commenced on 6mg dexamethasone daily. Not sleeping well at night again. Fatigue has improved as has appetite. / Continue to monitor.
03/04/2014 / Fatigue worse since started Avastin. Has had two cycles and fatigue is quite marked. Not mobile for less than 50% of the time. / Continue to monitor.
12/05/2014 / ECOG 3, bed bound and doubly incontinent. Avastin delayed as has anal sinus and resolving pneumonia. Sleeps in hospital bed in lounge. Carer stays with him in lounge. / Have sent some extra information on fatigue management.
3 / 03/04/2014 / Section 6 – Dealing with treatment - Knowledge deficit r/t commencing new chemotherapy due to disease progression. MRI on 14/03 showed two new tumours. / Have education from outpatients chemo. Carer also been on internet looking for information. / Send out info related to manual.
12/05/2014 / Has had two cycles of Avastin. Now delayed due to anal sinus.
4 / 18/12/2013 / Section 7-Understanding Physical Symptoms – Patient complaining of painful soles in his feet / Painful soles of his feet.
? related to chemotherapy ? cause. Has been reviewed by medical oncologist and no suggestions / Continue to review
22/01/2014 / Painful feet subsided eventually but has recommenced dexamethasone and it has come back. / Pharmacist recommended Lyrica.
06/03/2014 / Has Lyrica charted but script not filled yet.
03/04/2014 / Now on Lyrica and symptoms are improving.
12/05/2014 / Symptoms now resolved. Carer feels it was the TMZ. Still on Lyrica.
5 / 21/01/2014 / Section 7-Understandng physical symptoms -Constipation with resulting anal abscess / Admitted to hospital 17/01/2014 for anal tear due to constipation / Refer to manual
Continue to monitor
03/04/2014 / Constipation not so much of a problem on Avastin. No longer taking Coloxyl and Senna, but monitoring closely.
12/05/2014 / Continues on regular Coloxyl and Senna. Not constipated, but has anal abscess. No longer dressed. On antibiotics and chemo withheld.
6 / 6/5/2014 / Section 7-Understandng physical symptoms -Bilateral Pulmonary emboli RT decreased mobility etc / Admitted last Thursday emergency to hospital by ambulance the transferred to hospital. High flow O2 and Clexane. Inpatient 6 days. Discharged on 5/03/2014. Has not been mobile much due to painful feet and fatigue. / Continues with twice a day Clexane. Encouraged patient and carer to mobilize more, get Lyrica script filled for painful feet and to increase fluids.
03/04/2014 / Continues to self-administer twice a day Clexane.
12/05/2014 / Continues on daily Clexane. Silver chain nurses now administering it. Patient now bed bound.
7 / 03/04/2014 / Section 7 –Understanding physical symptoms
Decreased mobility related to fatigue secondary to Avastin (commenced post disease progression) / Finding it hard to get out of the chair. Sitting for less than 50% of the time.
?Related to Avastin / Reviewed by palliative care nurse. She has organized loan chair that will aid patient to get into sitting position. Carer is finding it hard to get patient mobile.
12/05/2014 / Patient now in hospital bed in lounge. Has had several falls. Carer stays in lounge with him. ECOG = 3.
8 / 12/05/2014 / Section 7-Understanding physical symptoms. Incontinent of urine and sometimes faeces ? cause. / Carer is unsure of the reason for the incontinence. ? related to tumour progression. Silver Chain coming in daily and palliative care nurse weekly. Buying incontinence products. Son has been coming to help. / Called CNC to make her aware of problem. Will send out section on incontinence. Follow-up with palliative care nurse. Have advised carer that she should ask RN to come more often.
9 / 12/05/2014 / Section 2 – Caring for Yourself
Respite-Risk of carer strain related to being unable to leave house. / Patient deteriorated and now bed bound, poor transferring, falls and potential for injury. Carer unable to leave him alone. ECOG=3. Son has come to help them at times. Carer teary and unable to get to counselling sessions.
Carer felt that the social worker she spoke to was unhelpful. Increasing risk of carer strain and emotional distress. / Called CNC. She said the neurological community support program had been contacted as far as she was aware for respite. Follow-up
14/05/2014 / Called carer -she still had not heard from anyone at this stage. / Will call CNC to discuss. Also left message with Social worker from hospital who might be able to help more than previous person. Have sent information in post to carer.
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