Teaching Family Carers About Home-Based Palliative Care: Final Results from a Group Education Program

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1 Vol. 38 No. 2 August 2009 Journal of Pain and Symptom Management 299 Original Article Teaching Family Carers About Home-Based Palliative Care: Final Results from a Group Education Program Peter Hudson, RN, PhD, Tina Thomas, DPSYCH (Health), Karen Quinn, RN, MN, Mark Cockayne, MPHC, MHA, and Maxine Braithwaite, BAppSci (Hons), DPSYCH (Health) Centre for Palliative Care Education & Research (P.H., T.T., K.Q.), St. Vincent s & The University of Melbourne; South East Palliative Care (M.C.); and St. Vincent s Hospital Melbourne (M.B.), Melbourne, Victoria, Australia Abstract Without the considerable support provided by family carers, many patients receiving palliative care would be unable to remain at home. However, family carers typically lack the required information and skills to prepare them for such a role. Pilot work has demonstrated that group education programs for family carers can be readily developed; they are feasible, accessible, and useful. This project sought to build on our pilot research to further examine the effectiveness of a group education program by evaluating the outcomes with a larger number of participants. The program aimed to prepare primary family carers for the role of supporting a relative with advanced, noncurative cancer at home. The psycho-educational program 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. The following dependent variables were measured at three time points: carer competence, preparedness, rewards, and information needs. The three time points were: commencement of the program (Time 1), upon completion (Time 2), and two weeks later (Time 3). A total of 156 participants (including the pilot phase) completed Time 1 questionnaires and 96 completed all three time periods (62%). Between Time 1 and Time 2, the intervention had a statistically significant positive effect on preparedness, competence, rewards, and having informational needs met. Outcomes were maintained at Time 3. There was no difference in the effectiveness of the intervention for participants in regional areas compared to participants in metropolitan areas. This study demonstrated that a group education program to prepare family carers for the role of supporting a dying relative at home was effective. Implications for further research and practice are outlined. J Pain Symptom Manage 2009;38:299e308. Ó 2009 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, education, family, carers Funding for this work was provided by the Department of Health and Ageing, Australia and the Bethlehem Griffiths Research Foundation. Address correspondence to: Peter Hudson, RN, PhD, Centre for Palliative Care Education & Research, Ó 2009 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. St. Vincent s & The University of Melbourne, P.O. Box 2900, Fitzroy, Victoria 3065, Australia. peterh@medstv.unimelb.edu.au Accepted for publication: September 9, /09/$esee front matter doi: /j.jpainsymman

2 300 Hudson et al. Vol. 38 No. 2 August 2009 Introduction Family carers, in the context of palliative care, have been defined as any relative, friend, or partner who has a significant relationship and provides assistance (physical, social, and/or psychological) to a person with a life-threatening, noncurative illness. These individuals may be primary or secondary carers and may or may not live with the care recipient. 1 In recognition of the contribution of family carers, many countries have developed national standards for palliative care provision that advocate that family carers needs are assessed and addressed. 2e5 Carer charters mandating assessments of carers needs also exist in several countries. 6 Furthermore, the importance of developing evidence-based strategies to enhance the support offered to family carers of palliative care patients has been comprehensively justified in numerous publications. 7e9 While the term support can have multiple interpretations, the following definition seems to capture the essence of this concept as it relates to family carers and palliative care: Support for family carers who are assisting a relative/friend requiring palliative care may incorporate practical, educational, psychological, spiritual, financial or social strategies (based on unmet needs and a desire by the carer(s) for assistance) with the intention of enhancing the carer s (s) capacity to undertake their role, respond to its challenges and maintain their own health (before and after their relative/friends death). 1 Accordingly, we set out to develop and evaluate a supportive intervention for primary family carers of patients receiving palliative care. We designed a group education program for primary family carers with the intention of improving their preparedness, competence and positive emotions associated with the carer role, and reducing their unmet needs. Project Background and Pilot Work The theoretical framework, together with a comprehensive overview of the intervention development process and content, has been published elsewhere, alongside the pilot phase results. 10 The theoretical framework underpinning the intervention was based on a transactional model of coping, in which carers make cognitive appraisals to determine the possible impact of their situation. 11,12 The more capable the carer is, or the greater the number of resources at their disposal to manage an event, the more likely the individual will display adaptive behaviors. Such resources include feelings of preparedness, competence, having adequate information, and focusing on positive aspects of the role. Hence, strategies that targeted these domains were included in the education program. 12 The main content of the Carer Group Education Program (CGEP) was based on a psycho-educational intervention with individual home-based family carers, 13 with refinement from the research team to adapt it for the group context. The CGEP incorporated three sessions (1.5 hours each) over a three-week period. The sessions focused on (1) the typical role of a carer in the palliative care context, including an overview of the services available from the palliative care team, local doctor, and other support services; (2) strategies for self-care (carer wellbeing) and for their relative/friend (e.g., symptom management); and (3) strategies for caring for a person when death is approaching, and overview of bereavement supports for the family carer. Health-care professionals (e.g., social workers, nurses) employed from within the participating home-based palliative care services facilitated the program after attending a short training session. The education sessions were semistructured and included a mix of presentation and group work. Carers received a copy of a Carer Guidebook designed specifically for preparing family carers for the role of supporting a dying relative. 14 The CGEP was designed for a minimum of four and maximum of eight carers. The pilot phase demonstrated that family carers who attend the CGEP reported that the program was applicable, useful, and accessible. 10 Moreover, for the 44 carers who completed all three data collection sets, a significant positive effect was found for the following outcomes: preparedness for the caring role, caregiving competence, caregiving rewards, and having information needs met. Given the results of this

3 Vol. 38 No. 2 August 2009 Teaching Family Carers About Home-Based Palliative Care 301 preliminary study, testing the evaluation with a larger sample size was recommended. Hence, we set out to deliver the same intervention to a larger number of participants and test its effectiveness. Methods Sample and Recruitment Primary family carers of patients with advanced cancer (where cure was not an option and death was expected, typically within months) receiving home-based palliative care services at six sites located across metropolitan and regional Victoria (Australia) were invited to participate. Inclusion criteria required that the carer was older than 18 years and could speak and understand English. Carers who were demonstrating pronounced psychological distress (as judged by the research assistant) were not recruited. Ethics approval was obtained from each of the participating clinical sites. Data Collection To Determine the Effectiveness of the Program. There were three time points for data collection: Time 1, or commencement of the carer education program; Time 2, or immediately following the carer education program; and Time 3, or two weeks following the final carer education session (via mail). A sociodemographic questionnaire was administered at Time 1 and four validated self-report measures were completed by participants at Time 1, Time 2, and Time 3. Measures were chosen in accordance with variables outlined in the theoretical framework. The four measures included in the analyses were: Carer Competence Scale; 15 Preparedness for Caregiving Scale; 16 Family Inventory of Need; 17 and Rewards for Caregiving Scale. 18 The Carer Competence Scale consists of four items that are measured on a four-point Likert scale (total scores range from 0 to 12). The Preparedness for Caregiving Scale consists of eight items that are measured on a fivepoint Likert scale (total scores range from 0 to 32). The Family Inventory of Need consists of two subscales: importance of need and how well that need has been met. Each subscale consists of 20 items that are each measured on a five-point Likert scale (total subscale scores range from 0 to 180). The Rewards of Caregiving Scale consists of ten items that are measured on a five-point Likert scale (total scores range from 0 to 40). For all of the scales, a low score represents a negative caregiving situation and a high score represents a positive caregiving situation. The validity and reliability of these measures have previously been comprehensively outlined. 19 A measure of carer burden was included in the pilot phase and showed no significant improvement. It was decided to discontinue using this measure because caring for a dying relative is usually very challenging, and no matter how much support is offered, it may not lessen the demanding nature of the role. 10 Moreover, it has been argued that the concept of burden is too broad, making it difficult to develop interventions targeting this domain. 20 Qualitative Perspectives. Participants (not including those recruited for the pilot phase of the study) were also invited to complete a short evaluation form asking them to identify the key benefits of participating in the program. To Determine Uptake of the Program in the Future. Once all programs had been delivered, the manager of each of the sites involved was sent a short questionnaire developed by the research team, which assessed their desire to and the feasibility of running the CGEP on an ongoing basis. Analysis Data were collected and presented using both descriptive and inferential statistics. Analyses were done using the Statistical Package for the Social Sciences (SPSS version 12). Descriptive statistics were used to describe the basic features of the sample population. A multivariate analysis of variance (ANOVA) was used to test for the impact of attrition. A repeatedmeasure ANOVA was used to test for the effectiveness of the intervention. The main independent variables were time and region and the dependent variables included were competence, preparedness, rewards, and information needs (importance of the information need and having the information need met). For all of the quantitative data analyses, we

4 302 Hudson et al. Vol. 38 No. 2 August 2009 combined the results from the pilot phase with data from the additional participants. The qualitative content of the evaluation forms was analyzed using thematic content analyses. Main themes were identified from the first reading of the evaluation forms, and then the forms were coded according to the identified themes. Results Missing data were found to be randomly spread throughout the data. For cases that had less than 20% of a variable missing, the mean for each missing item was entered. A small number of cases were found to have large amounts of missing data for a particular variable, greater than 20%. In these cases, the mean score for the variable was used. This is a conservative method of managing missing data. 21 Checks for the violations of the assumptions of normality were conducted on all variables. There was no significant skewness associated with any measures. Sample and Sociodemographics A total of 32 education programs were conducted across six sites (this includes both the pilot programs and the main phase of the study). During the time that the programs were conducted, all eligible carers of patients newly admitted to each of the palliative care services were invited to participate in the study (n ¼ 360 family carers). There were 204 refusals (57%) to participate in the program. The most common reason for refusal to participate in the carer education programs were as follows: (1) carer too busy with work or family commitments (n ¼ 60/29%); (2) patient too unwell to leave (n ¼ 32/16%); (3) the time or location of program was not suitable (n ¼ 25/12%); (4) carer coping well or being well supported (n ¼ 21/10%); (5) carer not interested (n ¼ 21/10%); and (6) other reasons (n ¼ 8/4%). Thirty-seven carers (18%) provided no reason for refusing to participate. There were 156 carers (109 women, 47 men) who agreed to participate in the study (43%) and attended at least one session of a program; 87 participants were from regional sites and 69 participants were from metropolitan sites. An average of five participants attended each program. All 156 participants completed a Time 1 questionnaire. Ninety-six participants completed a questionnaire at all three time periods (62%), leaving 60 carers who did not complete all three questionnaires (38%). Twenty-four participants (15%) only attended one or two sessions. Additionally, 13 (8%) completed the full program but did not complete at least one of the questionnaires, and another 12 (8%) did not attend the third session and did not complete the second questionnaire but still returned the Time 3 questionnaire. Finally, 11 participants (7%) with very high amounts of missing data on at least one questionnaire were not used in the main analyses. Demographic information has been reported for the total sample and separately for region (regional vs. metropolitan) in Table 1. Overall, the majority of participants were women (70%) and the mean age was 59 years (ranging from 20 to 84 years). They were mainly caring for a spouse (59%) or a parent (26%), whose mean age was 68 years (ranging from 19 to 93 years). Additionally, carers had been caring for an average of 24 months (ranging from 1 to 240 months) and most carers (82%) were living with the person they were supporting. Differences between regional and metropolitan cases were compared for each of the demographic variables listed in the table by conducting a series of cross-tabulation analyses and independent t-test analyses. Compared to metropolitan participants, more regional participants were born in Australia, c 2 (1) ¼ 12.59, P < 0.001, were more likely to be retired and less likely to work full-time, c 2 (4) ¼ 14.56, P < 0.01, were less likely to have stopped work to be a carer, c 2 (2) ¼ 10.26, P < 0.01, and were also more likely to have been a carer previously, c 2 (2) ¼ 7.54, P < Incomplete Participation Before examining the effectiveness of the intervention, a multivariate ANOVA was performed on all Time 1 variables to determine whether participants who completed all three time periods (full participation) differed from participants who did not complete all three time periods (partial participation). Participation level was entered as a betweengroup factor. There was no multivariate effect for participation level. Therefore, there were

5 Vol. 38 No. 2 August 2009 Teaching Family Carers About Home-Based Palliative Care 303 Table 1 Participants Demographic Information for Metropolitan, Regional, and Total Cases Regional Cases (n ¼ 87) Metropolitan Cases (n ¼ 69) Total Time 1 Participants (n ¼ 156) Carer Characteristics % n % n % n Sex Male Female Country of birthdaustralia Occupation Retired Domestic Full-time employment Part-time employment Stopped work to be a carerdyes Reduced work to be a carerdyes Previous carerdyes Care for others as well Yes Children Community assistance None Home help Meals-on-Wheels Nursing Reason you choose to care I wanted to I felt I should I have no choice Mean SD Mean SD Mean SD Mean age (years) Current healthdmean (1e5 scale, ¼ very poor, 5 ¼ very good) Financial pressuredmean (1e4 scale, ¼ no financial pressure, 4 ¼ a great deal of worry) Length of time caring for patient (months) Mean number of friends and family assisting % n % n % n Relationship of patient to carer Spouse Parent Child Friend Sibling Other relative Sex of patient Male Female Patient lives with carerdyes Recent patient hospitalizationdyes Mean SD Mean SD Mean SD Patient age Level of dependency (ECOG)dmean (1e5 scale, 1 ¼ low dependency, 5 ¼ total dependency) ECOG ¼ Eastern Cooperative Oncology Group scale.

6 304 Hudson et al. Vol. 38 No. 2 August 2009 no differences between full participation and partial participation on the Time 1 measures. Effectiveness of the Intervention To examine whether the intervention was effective, a repeated-measure ANOVA was performed on the following variables: preparedness, competence, rewards, and information needs (importance of information need and having information need met). Three time periods were compared for 96 participants: preintervention, postintervention, and at follow-up. The within-group factor was time and the between-group factor was region (regional or metropolitan). Using Pillai s criterion, multivariate effects within groups were found for time, F(10, 370) ¼ 7.98, P < (power ¼ 1.00). The results showed low associations between time and the combined dependent variables, h 2 ¼ No multivariate effect was found for region or for the interaction between time and region. Univariate analyses revealed significant differences between time periods on preparedness, F(2, 155) ¼ 40.31, P < 0.001, competence, F(2, 168) ¼ 15.48, P < 0.001, rewards, F(2, 162) ¼ 12.26, P < 0.001, and having information needs met, F(2, 172) ¼ 12.42, P < Post hoc contrasts revealed that, for all four variables, there were significant improvements in scores from Time 1 to Time 2: preparedness, F(1, 95) ¼ 21.38, P < 0.001, competence, F(1, 95) ¼ 59.85, P < 0.001, rewards, F(1, 95) ¼ P < 0.001, and having information needs met, F(1, 95) ¼ 29.49, P < There were no differences between Time 2 and Time 3 scores for any of the four variables. Therefore, as shown in Table 2, the intervention had a positive effect on preparedness, competence, rewards, and having informational needs met (Time 1 to Time 2). The positive effect for all four variables was maintained two weeks later (Time 2 to Time 3). There was no difference in the effectiveness of the intervention for participants in regional areas compared to participants in metropolitan areas. Qualitative Reflections Fifty-six participants made a comment about the benefits or impact of the program. Eleven key themes emerged, as shown in Table 3. The most frequently mentioned benefits reported by participants were as follows: 1) being more informed and aware of the services available (63%); and 2) receiving support and reassurance that people cared and the realization that they were not alone (48%). Other benefits reported by participants included 1) feeling more prepared for what lies ahead and more aware of the signs of death; 2) having the opportunity to share problems with others in a similar situation; 3) being able to talk to doctors directly and receive information on symptoms and medication; and 4) obtaining general reassurance about performing the caregiving role. Manager s Survey The manager of each of the six sites was sent a short questionnaire about the feasibility of running the CGEP on an ongoing basis. Four of the managers completed the form and three reported they would like to continue running the programs (although one reported they would vary the format slightly to suit their local needs). One manager, however, reported that it would be very difficult to keep running the programs due to lack of resources and they would require funding and dedicated time to coordinate future programs. Discussion Data from the 96 participants who attended the group education program and completed all three sets of questionnaires demonstrated statistically significant improvements in levels of preparedness, competence, rewards, and less unmet information needs. Furthermore, these positive outcomes were sustained over time (two weeks after the intervention). Participants also reported many benefits associated with attending the program, including being more informed about services, feeling more supported, and being more prepared. These findings indicate that it is possible to not only prepare family carers for the role of supporting a relative with a life-threatening illness but also to assist them to develop and recognize positive aspects associated with the role. Despite the favorable outcomes of the intervention, there are several noteworthy limitations. The absence of a control group is worth highlighting. In addition, carers who

7 Vol. 38 No. 2 August 2009 Teaching Family Carers About Home-Based Palliative Care 305 Table 2 Means and Standard Deviations for Measures of Adjustment for Palliative Care Preintervention, Postintervention, and Follow-Up by Region Time 1 (n ¼ 96) Time 2 (n ¼ 96) Time 3 (n ¼ 96) Measure Mean SD Mean SD Mean SD h 2 (sig.) Preparedness Total a a,b c Regional Metro Competence Total a a,b d Regional Metro Rewards Total a a,b e Regional Metro Information importance Total Regional Metro Information needs met Total a a,b c Regional Metro a Significant increase compared with Time 1, P < b No significant change compared with Time 2. c P < d P < e P < were non-english speaking were excluded from the study due to limited resources for translation. Finally, a comprehensive cost/benefit analysis was not undertaken. These limitations can be addressed through future research and using recommendations arising from our pilot work. 10 In addition, given the high refusal rate, we also advocate studies that explore strategies for enhancing uptake of these programs. While participants provided feedback that the program was accessible for the most part, some family carers who declined to participate acknowledged that this was because they were too busy with family or work commitments. One of the problems identified in earlier attempts to conduct education programs of this ilk is obtaining enough participants to make such programs viable. 22 While we averaged five participants per program, it would be useful to outline specific barriers to attending programs and then investigate strategies to address them. It is also worth noting that over one-quarter of the participants reported that they had previous experience as a carer. This could have impacted upon the favorable intervention results. However, we contend that this finding should be considered with caution because (in hindsight) the question related to prior family carer experience was somewhat vague and its meaning could have been interpreted differently. For example, some participants may have said they had prior experience because they had cared for a relative who was unwell but not necessarily a relative with advanced disease. The fact that some carers do not feel comfortable in leaving their house to attend these programs (even with the option of having volunteers or others to stay with the patient) reinforces the need for the option of one-on-one interventions delivered at home to be available. 13 It also highlights the importance of considering other ways of delivering interventions of this kind, for example, tele/video conferencing. For many family carers, time was the main obstacle to attending the program due to work and/or family commitments. It may be that a shorter version of the program could be offered or, alternatively, a multimedia version of the program could be developed for carers to watch at a convenient time. Also,

8 306 Hudson et al. Vol. 38 No. 2 August 2009 Main ThemedBenefits Table 3 Themes Related to the Perceived Benefits or Impacts of the Program No. of Participants to Comment (%) More aware of services available/information about services and access/information 37 (63) Not alone/support and help available/people care 28 (48) More prepared/knowledge of what lies ahead/signs of death/more aware 21 (36) Information about symptoms/medications/speak with doctor 20 (34) Group benefit/meet others in the same situations/meet other carers 19 (32) Reassurance/confidence/I m doing okay 18 (31) General positivedhelped me emotionally and practically/addressed my needs 11 (19) as a carer/a great program/very enlightening about care Discussion/questions/problem solving/share feelings 8 (14) Grief/acceptance of death/coping with death 6 (10) Increased understanding of the patient perspective/communication with patient 3 (5) The importance of making time for self-care 3 (5) many carers who work full-time would have preferred an evening time, so services delivering the program may need to consider a variety of times or locations to maximize carer attendance. Moreover, family carers should not have to wait until the patient is at home to receive formal guidance about their role. Testing psycho-educational initiatives in the hospital/ hospice setting prior to discharge is, therefore, warranted. Although the feedback from most of the managers of the participating clinical sites was favorable in terms of their desire and potential capacity to implement the program in the future, it was noted that additional funding and infrastructure to support such initiatives would be desirable. Indeed, if palliative care standards and carer charters are going to continue to mandate carer support based on needs assessments, then suitable funding is required to uphold these policy requirements in order for health professionals to be able to respond accordingly. To discover, following an assessment from a health professional, that a family carer lacks the preparation and skill set to support a dying relative, and then to find there are no resources for an appropriate response, is unethical. The impact of caring for a family member can have significant influence upon mental health, such as depression and anxiety. 23 Further research is required to identify whether or not these types of psycho-educational programs serve as protective factors against carers developing mental health problems. Surveys suggest that most palliative care patients want to spend a significant proportion of their last stages of life at home. 24 It would be valuable to discern if education programs for family carers actually reduce the number of days spent in hospital or assist in more streamlined and strategically planned admissions. It seems from the evidence to date that there may be some similarities between the needs of family carers of patients with advanced cancer and those with advanced nonmalignant disease. 1 Accordingly, testing education programs for carers of people with neurodegenerative disorders and end-stage organ failure, for example, appears warranted. While some content would need to change, the core principles and approaches may be transferable. 1 These assumptions warrant exploration. In addition, testing programs and other supportive interventions with minority groups and those in resource poor environments is urgently required. Conclusion Group education programs have been recommended as a useful way to deliver support and information to palliative care families, 25 yet these programs have been underdeveloped. 8 Psycho-educational interventions have demonstrated their capacity to increase carer quality of life and to increase knowledge of patient symptoms. 26,27 The evaluation of a psycho-educational group education program described in this study showed that the overwhelming majority of family caregivers reported that the program was applicable, useful, and accessible. This finding supports Harding et al. s 22 earlier intervention work in this area.

9 Vol. 38 No. 2 August 2009 Teaching Family Carers About Home-Based Palliative Care 307 In conclusion, based on our pilot work 10 and further testing with a larger number of participants, we have been able to demonstrate effectiveness of a group education program aimed at preparing family carers for the role of supporting a relative or friend with advanced cancer. We look forward to the emergence of other strategies and further studies to enhance understanding of ways to support family carers. Without such a knowledge base for practice, the rhetoric of family centered palliative care may prevail. Acknowledgments The authors would like to acknowledge the project officers and education facilitators; their clinical partners: South East Palliative Care, Calvary Health Care Bethlehem, Ballarat Hospice Care, South-West Health Care Warnambool, and Barwon Health Geelong; and the following research associates: Professor Linda Kristjanson, Professor Michael Ashby, Dr. David Brumley, and Dr. John Fisher. References 1. Hudson P, Payne S. The future of family caregiving: research, social policy and clinical practice. In: Hudson P, Payne S, eds. Family carers and palliative care. A guide for health and social care professionals. Oxford: Oxford University Press, Ferrell B, Connor SR, Cordes A, et al. The national agenda for quality palliative care: the National Consensus Project and the National Quality Forum. J Pain Symptom Manage 2007;33(6): 737e National Institutes of Health. National Institutes of Health state-of-the-science conference statement: improving end of life care, Available at: consensus.nih.gov/2004/2004endoflifecaresos024 html.htm. Accessed March 26, Palliative Care Australia. Standards for providing quality palliative care for all Australians. Canberra: Palliative Care Australia, National Institute for Clinical Excellence. Guidance on cancer services: Improving supportive and palliative care for adults with cancer. The manual. London: National Institute for Clinical Excellence, Arksey H, Corden A. Policy initiatives for family carers. In: Hudson P, Payne S, eds. Family carers and palliative care: A guide for health and social care professionals. Oxford: Oxford University Press, Girgis A, Johnson C, Currow D, et al. Palliative care needs assessment guidelines. Newcastle, NSW: The Centre for Health Research & Psycho-oncology, Harding R, Higginson I. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med 2003;17(1):63e Hudson P. A critical review of supportive interventions for family caregivers of patients with palliative-- stage cancer. J Psychosoc Oncol 2004;22(4):77e Hudson PL, Quinn K, Kristjanson LJ, et al. Evaluation of a psycho-educational group programme for family caregivers in home-based palliative care. Palliat Med 2008;22(3):270e Lazarus R, Folkman S. Stress, appraisal, and coping. New York: Springer Publishing Co, Hudson P. A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care. Palliat Support Care 2003;1(4):353e Hudson PL, Aranda S, Hayman-White K. A psycho-educational intervention for family caregivers of patients receiving palliative care: a randomised controlled trial. J Pain Symptom Manage 2005; 30(4):329e Hudson P. Supporting a person who requires palliative care: A guide for family and friends. Melbourne: Palliative Care Victoria, Available at: Accessed March 17, Pearlin L, Mullan S, Semple S, Skuff M. Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 1990;30(5): 583e Archbold P, Stewart B, Greenlick M, Harvath T. Mutuality and preparedness as predictors of role strain. Res Nurs Health 1990;13:375e Kristjanson LJ, Atwood J, Degner LF. Validity and reliability of the Family Inventory of Needs (FIN): measuring the care needs of families of advanced cancer patients. J Nurs Meas 1995;3(2): 109e Archbold P, Stewart B. Family caregiving inventory. Portland: Oregon Health Sciences University, Hudson PL, Hayman-White K. Measuring the psychosocial characteristics of family caregivers of palliative care patients: psychometric properties of nine self-report instruments. J Pain Symptom Manage 2006;31(3):215e Walsh K, Jones L, Tookman A, et al. Reducing emotional distress in people caring for patients receiving specialist palliative care. Br J Psychiatry 2007;190:142e147.

10 308 Hudson et al. Vol. 38 No. 2 August Tabachnick BG, Fidell LS. Using multivariate statistics, 3rd ed. New York: Harper Collins College Publishers, Harding R, Higginson I, Leam C, et al. Evaluation of a short term group of intervention for informal carers of patients attending a home palliative care service. J Pain Symptom Manage 2004;27(5):396e Blanchard C, Toseland R, McCallion P. The effects of a problem-solving intervention with spouses of cancer patients. J Psychosoc Oncol 1996;14(2):1e Stajduhar KI, Davies B. Death at home: challenges for families and directions for the future. J Palliat Care 1998;14(3):8e Milberg A, Rydstrand K, Helander L, Friedrichsen M. Participants experiences of a support group intervention for family members during ongoing palliative home care. J Palliat Care 2005; 21(4):277e McMillan SC. Interventions to facilitate family caregiving at the end of life. J Palliat Med 2005; 8(1):S132eS Kristjanson L, Aranda S, Spry N, Oldham L, Hudson P. A randomised clinical trial to test a pain education program for patients with cancer and their family carers. In: report to National Health and Medical Research Council Report, 2006.