Background: Family caregivers are often responsible for providing significant support to relatives who require palliative care at home. However, evidence suggests that family caregivers have limited information, resources or support to prepare them for such a role. Furthermore, family caregiving can be associated with negative physical, financial and psychosocial outcomes. Purpose: This project sought to examine the utility of a group family caregiver psycho-educational programme focused on preparing primary family caregivers for the role of supporting a relative with advanced cancer at home. Method: The education programme consisted of three consecutive weekly sessions presented in a group format, conducted at six home-based palliative care services across metropolitan and regional Victoria (Australia). Participating caregivers were required to complete a set of self-report questionnaires measuring caregiver competence, preparedness, optimism, rewards, social support, burden and information needs, at three time points: commencement of the programme (T1), upon completion (T2) and 2 weeks later (T3). Caregivers were also asked to report on the relevance, acceptability and content of the programme, as well as any barriers to access. Results: Sixteen education programmes were conducted, with 74 caregivers attending the first session. Forty-four caregivers completed all three data collection sets. Following the intervention, a significant positive effect was found for the following outcomes: preparedness for the caring role, caregiving competence, caregiving rewards and having information needs met from T1 to T2. These improvements were maintained at follow-up (T3). Feedback on the individual sessions and entire programme was favourable and the overwhelming majority of participants reported that the programme had a positive impact on their lives. Conclusions: This study demonstrated that a group education programme to prepare family caregivers for the role of supporting a dying relative at home was accessible, applicable and effective.
1 World Health Organisation . National cancer control programmes: policies and managerial guidelines.2nd ed.Geneva : WHO ; 2002.
2.
2 Kurtz MKurtz JGiven CGiven B . Relationship of caregiver reactions and depression to cancer patients’ symptoms, functional states, and depression – a longitudinal view.Soc Sci Med1995; 40: 837 – 846 .
3.
3 Ramirez AAddington-Hall JRichards M . The carers. In: M FallonB O’Neill , (eds), ABC of palliative care.London : BMJ Books ; 1998. p. 208–211.
4.
4 Barg FPasacreta JNuamah IRobinson KAngeletti KYasko J . A description of a psychoeducational intervention for family caregivers of cancer patients.J Fam Nurs1998; 44: 394 – 413 .
5.
5 Rhodes PShaw S . Informal care and terminal illness.Health Soc Care Community1999; 7: 39 – 50 .
6.
6 Adam J . Discharge planning of terminally ill patients home from an acute hospital.Int J Palliat Nurs2000; 6: 338 – 345 .
7.
7 Stajduhar KIDavies B . Death at home: challenges for families and directions for the future.J Palliat Care1998; 14: 8 – 14 .
8.
8 Hunt RFazekas BLuke CRoder D . Where do patients with cancer die in South Australia, 1990–1999: a population based review.Med J Aust2001; 175: 526 – 529 .
9.
9 Victorian Government Department of Human Services. Palliative Care Program policy and funding guidelines 2004–2005: Department of Human Services, Melbourne; 2004: 10.
10.
10 Bucher JHouts PNezu CNezu A . Improving problem-solving skills of family caregivers through group education.J Psychosoc Oncol1999; 16: 73 – 84 .
11.
11 Grbich CParker DMaddocks I . Communication and information needs of care-givers of adult family members at diagnosis and during treatment of terminal cancer.Prog Palliat Care2000; 8: 345 – 350 .
12.
12 Stajduhar KIDavies B . Variations in and factors influencing family members’ decisions for palliative home care.Palliat Med2005; 19: 21 – 32 .
13.
13 Kristjanson LAoun S . Palliative care for families: remembering the hidden patients.Can J Psychiatry2004; 49: 359 – 365 .
14.
14 Dawson SKristjanson L . Mapping the journey: the family carers’ perceptions of issues related to end-stage care of individuals with muscular dystrophy or motor neurone disease.J Palliat Care2003; 19: 36 – 42 .
15.
15 Hudson PLAranda SKristjanson LJ . Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals.J Palliat Med2004; 7: 19 – 25 .
16.
16 Blanchard CToseland RMcCallion P . The effects of a problem-solving intervention with spouses of cancer patients.J Psychosoc Oncol1996; 14: 1 – 21 .
17.
17 Pasacreta JBarg FNuamah IMcCorkle R . Participant characteristics before and 4 months after attendance at a family caregiver cancer education program.Cancer Nurs2000; 23: 295 – 303 .
18.
18 Hudson P . A critical review of supportive interventions for family caregivers of patients with palliative-stage cancer.J Psychosoc Oncol2004; 22: 77 – 92 .
19.
19 Girgis AJohnson CCurrow DWaller AKristjanson LJMitchell G . Palliative care needs assessment guidelines. Newcastle: The Centre for Health Research & Psycho-oncology; 2006.
20.
20 Milberg ARydstrand KHelander LFriedrichsen M . Participants’ experiences of a support group intervention for family members during ongoing palliative home care.J Palliat Care2005; 21: 277 – 284 .
21.
21 Harding RHigginson I . What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness.Palliat Med2003; 17: 63 – 74 .
22.
22 McMillan SC . Interventions to facilitate family caregiving at the end of life.J Palliat Med2005; 8: S132 – S139 .
23.
23 Kristjanson LAranda SSpry NOldham LHudson P . A randomised clinical trial to test a pain education program for patients with cancer and their family carers. Project report for the National and Medical Research Council; 2006.
24.
24 National Health and Medical Research Council. Clinical practice guidelines for the psychosocial care of adults with cancer. National Breast Cancer Centre, Camperdown, New South Wales; 2003.
25.
25 Firth P . Groupwork in palliative care. In: P FirthG LuffDP Oliver , (eds), Loss, change and bereavement in palliative care; 2005. p. 167–184.
26.
26 Harding R . Carers: current research and developments. In: P FirthG LuffD Oliviere , (eds), Facing death: loss, change and bereavement in palliative care.1st ed.Open University Press, Berkshire ; 2005. p. 150–166.
27.
27 Lazarus RFolkman S . Stress, appraisal, and coping.New York : Springer Publishing Co ; 1984.
28.
28 Hudson P . A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care.Palliat Support Care2003; 1: 353 – 365 .
29.
29 Hudson PLAranda SHayman-White K . A psycho-educational intervention for family caregivers of patients receiving palliative care: a randomised controlled trial.J Pain Symptom Manage2005; 30: 329 – 341 .
30.
30 Hudson PAranda SMcMurray N . Intervention development for enhanced lay palliative caregiver support – the use of focus groups.Eur J Cancer Care2002; 11: 262 – 270 .
31.
31 Harding RHigginson ILeam CDonaldson NPearce AGeorge R . Evaluation of a short term group of intervention for informal carers of patients attending a home palliative care service.J Pain Symptom Manage2004; 27: 396 – 408 .
32.
32 Hudson P . Manual for conducting an education program for family caregivers of home based palliative care patients. Melbourne (Australia): Centre for Palliative Care Education and Research; 2007.
33.
33 Hudson P . Supporting a person who requires palliative care: a guide for family and friends.Melbourne : Palliative Care Victoria ; 2004.
34.
34 Hudson PLHayman-White K . Measuring the psychosocial characteristics of family caregivers of palliative care patients: psychometric properties of nine self-report instruments.J Pain Symptom Manage2006; 31: 215 – 228 .
35.
35 Tabachnick BGFidell LS . Using multivariate statistics.4th ed.Boston : Allyn and Bacon ; 2001.
36.
36 Walsh KJones LTookman AMason CMcLoughlin JBlizard R . Reducing emotional distress in people caring for patients receiving specialist palliative care.Br J Psychiatry2007; 190: 142 – 147 .
37.
37 McMillan SCSmall BJ . Using the COPE intervention for family caregivers to improve symptoms of hospice homecare patients: a clinical trial.Oncol Nurs Forum2007; 34: 313 – 321 .
38.
38 Kurtz MEKurtz JCGiven CWGiven B . A randomized, controlled trial of a patient/caregiver symptom control intervention: effects on depressive symptomatology of caregivers of cancer patients.J Pain Symptom Manage2005; 30: 112 – 122 .
39.
39 Kwak JSalmon JRAcquaviva KDBrandt KEgan KA . Benefits of training family caregivers on experiences of closure during end-of-life care.J Pain Symptom Manage2007; 33: 434 – 445 .
40.
40 Pearlin LMullan SSemple SSkuff M . Caregiving and the stress process: an overview of concepts and their measures.Gerontologist1990; 30: 583 – 593 .
41.
41 Archbold PStewart BGreenlick MHarvath T . Mutuality and preparedness as predictors of role strain.Res Nurs Health1990; 13: 375 – 384 .
42.
42 Kristjanson LJAtwood JDegner LF . Validity and reliability of the family inventory of needs (FIN): measuring the care needs of families of advanced cancer patients.J Nurs Meas1995; 3: 109 – 126 .
43.
43 Archbold PStewart B . Family caregiving inventory.Portland : Oregon Health Sciences University ; 1996.
44.
44 Saranson ISaranson BShearin EPierce G . A brief measure of social support: practical and theoretical implications.J Soc Pers Relat1987; 4: 497 – 410 .
45.
45 Glajchen MKornblith AHomel PFraidin LMauskop APortenoy RK . Development of a brief assessment scale for caregivers of the medically ill.J Pain Symptom Manage2005; 29: 245 – 254 .
46.
46 Scheir MCarver C . Optimism, coping, and health: assessment implications of generalized outcome expectancies.Health Psychol1985; 4: 219 – 247 .
