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Grief support provided to caregivers of palliative care patients in Spain

Patricia Yi, Pilar Barreto, Carmen Soler, Miguel Fombuena, Victoria Espinar, Lorenzo Pascual, Ramn Navarro, Remedio Gonzlez, Jordi Bernabeu and Jess Surez Palliat Med 2006 20: 521 DOI: 10.1191/0269216306pm1165oa The online version of this article can be found at: http://pmj.sagepub.com/content/20/5/521

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Palliative Medicine 2006; 20: 521 531

Grief support provided to caregivers of palliative care patients in Spain

Patricia Yi, Pilar Barreto Department of Personality, Evaluation and Psychological Treatments, University of Valencia, Valencia, Carmen Soler Dr Moliner Hospital, Serra, Valencia, Miguel Fombuena, Victoria Espinar Palliative Medicine Unit, Dr Moliner Hospital, Serra, Valencia, Lorenzo Pascual Centro de Salud de Manises, Ramo n Navarro Palliative Medicine Unit, Dr Moliner Hospital, Serra, Valencia, Remedio Gonza lez Department of Personality, Evaluation and Psychological Treatments, University of Valencia, Valencia and Jordi Bernabeu and Jesu rez Department of Investigation and Diagnostics Methods in Education, University of Valencia, s Sua Valencia Grief support for relatives of patients in palliative care is recognized as a fundamental practice within palliative medicine. The aim of this research was to determine the nature and extent of grief support programs offered to relatives of patients in palliative care in Spain. A postal survey was carried out among members of the Spanish Society of Palliative Care. The members names were obtained through the Societys 2000 Directory, which lists 160 different teams, of which 50% answered a questionnaire made up of 34 questions, some open-ended and others multiple choice. Results show that 88.6% of the services include grief support, that mainly emotional and one-to-one care is provided (92.4 and 89.9%, respectively), and that the number of psychologists and social workers in each team is limited. The risk factors most commonly taken into account by professionals are: absence of family support (36.92%) and the bereaveds case history (21.54%); while the most widely used diagnostic criteria for complicated bereavement are blame and depression (12.5 and 11.36%). In conclusion, it can be seen that bereavement services are not completely consolidated in Spain and there is a need for a greater variety of intervention strategies. Palliative Medicine 2006; 20: 521 531
Key words: bereavement; caregivers; grief; palliative care; psychosocial support systems; risk assessment

Introduction
Over the last few years, especially in Spain, the population has steadily aged. Among other effects, this has resulted in an increased number of patients with chronic illnesses, and a corresponding need for people to care for the terminal patients palliative care.1 4 Palliative care began in Spain in 1987, forming part of both the Health System and State Social Security System. Nowadays, there are specific centres that provide only palliative care, and non-specific centres offering a wide range of health services, including palliative care. It is estimated that the current palliative care programs meet 26% of the countrys needs (27 643 patients a year). However, the distribution of these services is uneven, not only geographically, but also concerning the lack of emphasis given to some areas of palliative care, such as
Address for correspondence: Patricia Yi, Research Investigator, Department of Personality, Evaluation and Psychological Treatments, University of Valencia, Av. Blasco Iba n ez, 21 46010 Valencia, Spain. E-mail: patricia.yi@uv.es
# 2006 Edward Arnold (Publishers) Ltd

psychological and spiritual support, help for family members and bereavement follow-up.5,6 Grief support forms part of the services provided to caregivers of palliative care patients.7 9 In order to plan these services adequately, it is of interest to prospectively identify people who may have future problems in coping with bereavement,10 and intervene in order to diminish, where possible, the effects of the risk factors. This would decrease any unnecessary suffering and, at the same time, make it possible to direct support towards the more urgent cases, thereby preventing additional medical problems in these people, and thus reducing the public health workload. Research has been carried out into grief support programs for family members in various countries,11 17, but in Spain, no similar study has been made, despite the existence of palliative care for a number of years. The aim of this study was to investigate the nature and extent of the grief support programs for family members as part of palliative care services in Spain, and takes into account the radical change in theories and models of bereavement due to new, structural and systemic theories which have taken place in recent years.
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Some of the situations anticipated were: Fewer palliative care services with grief support than without it. Grief support programs carried out mainly by only one professional. The grief support specialist will focus on the more emotional aspects of the bereaved and will use an informal approach, both when choosing the family members at risk of experiencing complicated bereavement and also when deciding on how long grief support will last and how results will be assessed.

Results
The questionnaire was completed mainly by psychologists 31 (39%), and doctors 29 (36%); followed by social workers 14 (18%), nursing staff five (6%) and others (1.3%) from palliative care teams. There was a wide variation in the answers to question 15: How much time do you dedicate monthly to the familys grief support (in hours)? Results will be presented as follows: extent of grief support given to family members, characteristics of grief support, grief support assessment, assessment of grief intervention results, aspirations and future projects. Extent of grief support given to family members The results show that most palliative care teams in Spain attend the patients family throughout the last days of his/her life (97.5%), but that bereavement followup for these same relatives is provided to a somewhat lesser degree (88.6%). All members of a palliative care team (doctors, nurses, psychologists, social workers, volunteers and others) are responsible for providing bereavement follow-up. However, a difference in roles exists, in that not all professionals working in palliative care are charged with grief support. The most numerous group of professionals providing bereavement follow-up to relatives are the nursing staff (an average of 2.44 nurses (male and female) per team), and the least numerous, the volunteers (an average of 4.76 0.50) (Figure 1). Furthermore, it can be seen that a greater proportion of psychologists are responsible for bereavement support when compared to the total number working in palliative care (Figure 1). In spite of this, on average there is not even one psychologist per team, with 31.3% of palliative care teams having no psychologist at all. This is, in all likelihood, why some teams resort to using outside psychological help. The previously mentioned uneven geographical distribution of palliative care in Spain,6 is supported by our data. Of the registered palliative care resources, 67.5% are concentrated within three communities: Catalonia, Madrid and Andalusia; with the highest number of different specialists found in only two communities: Galicia and Catalonia. Bereavement follow-up in most Spanish regions is provided by the nursing staff and the psychologist, whereas in Catalonia, this service is within the domain of the social worker. Characteristics of grief support More than one worker from each team may be responsible for determining a family members need for grief support, distributed as follows: team consensus 38%, the psychologist 36.7%, any one of the team members 35.4%, the physician 34.2%, the nursing staff 27.8%, the social worker 12.7%, and others 2.5%; as shown, the

Method
This study is descriptive and exploratory. The relevant variables of the study correspond to the 34 items in the questionnaire. Subjects The research subjects consisted of all palliative care teams who responded to the survey. A total of 160 different teams were identified from the directory of palliative care resources of the Spanish Society of Palliative Care 2000,18 80 of which answered (50%). Two of the questionnaires were incomplete, and as such were not included in the evaluation. Instrument The questionnaire, which was specifically designed for this research, was developed based on specialized literature and on the experience of a group of experts. It was made up of 34 questions divided into six sections: service data (13 questions), the formation and running of the team (nine questions), related associations (three questions), work results (seven questions), systematization of documents (one question) and projects (three questions). Most of the questions were multiple choice, however six were open-ended and were subsequently analysed as to content (see Appendix). Procedure A self-administered postal survey was sent to all heads of palliative care units, in every case a doctor, during the second half of 2001. A letter was included informing them about the research and its aims, and answers were received by post, fax or e-mail. The research project was previously checked and approved by both the Ethics and Research Commissions of Valencia University and Dr Moliner Hospital.

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Grief support in Spain 523 to receive help in coping with their grief. One-to-one counseling is used by 79.9% of the teams, 60.8% use the clinical impression, and only a small percentage use standardized instruments (2.5%). Variations in the methods used could also be seen in relation to the profession of the person making the assessment. As observed, doctors and psychologists prefer to use counseling (47.92 and 39.06%), whereas the nursing staff and social workers, in addition to the above-mentioned methods, also use self-devised checklists (25 and 24.14%). Furthermore, it can be seen that standardized instruments to assess the need for grief support are used only in Catalonia and Valencia. Criteria used to predict grief-related problems. Professionals were asked to indicate the most common criteria used by the team to predict any possible problems the relative may have when coping with grief. More than one criterion could be put down as an answer. In this way, it was found that the adjustment by the family member to the patients illness (84.8%) and risk factor consideration (83.5%) were the most commonly mentioned criteria. When the results were analysed in relation to each profession, it was observed that the physicians and psychologists mainly opted for risk factors, whereas the nursing staff preferred to use the adjustment level of the family member. The most commonly quoted risk factors are lack of social family support and the bereaved persons previous case history; once again differences could be found depending on the different type of professional involved. Thus, we observed that the three most widely-mentioned factors by physicians were variables of personality and/or ways of coping (7.89%), the relationship between the patient and the bereaved (7.89%), and the type of illness (5.26%). The risk factors chosen by the nursing staff were other factors (28.57%) and the type of illness and adjustment to it (14.29%), whereas the psychologists opted to look at the case history and/or previous unresolved grief (12.5%), the relationship between the patient and the bereaved (6.25%) and other factors (6.52%). Finally, the social workers selected age (15.38%), case history (11.54%) and the relationship between the patient and the bereaved (11.54%) as the most common risk factors. Diagnostic criteria for complicated bereavement. The diagnostic criteria for complicated bereavement most commonly quoted by the specialists when answering the survey were excessive feelings of guilt shown by the bereaved (12.5%), the existence of a depressive disorder (11.36%) and remaining in one of the initial stages of the grief process (9.09%). By analysing the different diagnostic criteria selected, it can be seen that these differences also depend on profession (Table 1). Thus, the

Distribution of professions in the palliative care units

Others 1.57 Doctors 1.87

Volunteers 4.76 Social workers 0.73

Nursing staff 4.23 Psychologists 0.76

Distribution of professions in grief support

Volunteers 0.53 Social workers 0.51 Psychologists 0.81

Others 0.25

Doctors 1.14

Nursing staff 2.44

Figure 1 Distribution (average number per unit) of professions working in palliative care units and in grief support.

psychologist and the physician are the individuals who most often make this decision, and in no case is the decision taken by volunteers. Grief support usually begins during the patients illness (53.2%) and ends after an informal assessment is carried out (60.8%) at some time after the death of the patient. An informal assessment is defined as one that has no written form: index, questionnaire or checklist. Principally, emotional support (92.4%) and informative help (89.9%) are provided, one-to-one counseling being the most frequent approach (87.2%), along with telephone contact (83.3%). Support groups and social activities, which are very popular in other countries, do not appear to be particularly widespread practices in Spain (16.7 and 10.3%). With regard to follow-up subsequent to professional intervention, 41% of those who answered the survey said it was carried out by telephone (77%). The professional intervention during the grieving period as well as the follow-up was mostly offered free-of-charge (96.1%). Grief support assessment Methods for assessing grief support needs. It is important to have methods of assessing exactly who needs

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Table 1 Diagnostic criteria of complicated bereavement according to profession of person surveyed

Diagnostic criteria Profession of person surveyed Doctors Nurse % 48.28 2.63 2.63 13.16 0.00 5.26 2.63 5.26 Psychologist % 60.00 14.29 0.00 0.00 0.00 0.00 0.00 0.00 Social worker Others Total % 100 0.00 0.00 0.00 0.00 0.00 0.00 0.00

n
No answer Depends on stage of grief Guilt Depression Daily life Somatizations Thoughts of suicide DSM-IV TR 14.00 1.00 1.00 5.00 0.00 2.00 1.00 2.00

n
3.00 1.00 0.00 0.00 0.00 0.00 0.00 0.00

n
4.00 4.00 10.00 5.00 7.00 0.00 3.00 2.00

% 13.33 6.25 15.63 7.81 10.94 0.00 4.69 3.13

n
1.00 7.00 0.00 0.00 1.00 0.00 0.00 0.00

% 7.14 26.92 0.00 0.00 3.85 0.00 0.00 0.00

n
1.00 0.00 0.00 0.00 0.00 0.00 0.00 0.00

n
23.00 13.00 11.00 10.00 8.00 2.00 4.00 4.00

% 29.11 9.56 8.09 7.35 5.88 1.47 2.94 2.94

physicians preferred to use the depressive disorder as a criterion, the psychologists chose the bereaveds feelings of guilt, and both the nursing staff and social workers opted for monitoring the different stages of bereavement. Normal stages of bereavement can be found in Worden (1997)19, Ku bler-Ross (1969)20, Schneider (1984)21 and Pollock (1961)22. Furthermore, we can see that physicians used the diagnostic criteria set out in specialized literature (such as the DSM-IV TR) least when answering, and psychologists used them the most.

Assessment of grief intervention results One of the questions in the survey concerned the amount of experience in working with relatives of terminally ill patients. A very wide range of answers was obtained, from four months to 20 years, with the median being six years. In the time from start of first interventions up to the present day, 85.9% of the specialists perceived changes in how their work evolved, and 72.2% of them have carried out modifications. Most of the professionals left the question on the assessment of the results of their grief intervention unanswered (51.3%), but those who did answer indicated that they made use of one-to-one counseling (80%) and clinical impressions (64%) to assess their work. One of the most interesting points arising from the survey was the professionals view on what advantages and disadvantages of grief intervention they observed. The main advantages revolved around preventing complications arising during the relatives period of grief (23.2%) and facilitating the bereaved to adjust better (30.5%). The disadvantages, on the other hand, can be classified into three areas: a greater workload (15.9%), attachment problems (dependency between the bereaved and professional/centre, over-involvement of the professional) and iatrogenic problems (the pathology is overestimated, as yet non-existent problems are created, and the problems that do exist are stirred-up unnecessarily).

Aspirations and future projects The questions about aspirations and future projects were open-ended, and categorized using the Amigo Model,23 an analytical framework used by organizations, made up of the so-called hard and soft components, grouped together around a mission. The results show that the immediate projects of the palliative care teams focus on the hard components, specifically technology (30%) and structure (13.8%). Technology refers to the techniques used in carrying out the task, such as forming self-help groups for grieving relatives, working on risk factors of complicated bereavement and putting the information into writing. Structure refers to the work regulations and administrative mechanisms that act as support and allow the work to be carried out in a controlled, co-ordinated way, for example: the systematization of the grief support provided for relatives, and the drawing up of a protocol for complicated bereavement attention. The five-year projects underline the importance of infrastructure and technology once again, but it can also be seen that increasing importance is given to the mission (from 2.5% in the short-term to 6.3% in the long-term) and to dynamic adjustment (from 3 to 10%) (Table 2).

Discussion
A total of 50% of the units recorded in the 2000 Directory of Palliative Care,15 took part in this research, a similar level of participation to that obtained in comparable projects carried out in other countries.12 However, in our research, nearly all the participants belonged to the free, public health system, being salaried staff and connected, in some way, to a hospital or health-care centre; whereas palliative care in other countries is more varied, both as to its origins and organization.

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Table 2 Short- and medium-term projects of palliative care teams
Components of organization Short-term projects Medium-term projects % 2 3 9 11 24 2 1 2 2 0 24 80 2.5 3.8 11.3 13.8 30 2.5 1.3 2.5 2.5 0 30 100

n
Mission Dynamic adjustment Hard components Infrastructure Structure Technology Work system Soft components Culture and climate Human resource policies Management People and teams No answer Total

n
5 8 13 6 10 3 3 1 2 2 27 80

% 6.3 10 16.3 7.5 12.5 3.8 3.8 1.3 2.5 2.5 33.8 100

Extent of grief support to relatives of end-of-life patients in Spain In the field of palliative care in Spain, the role of the family is becoming increasingly important. Nevertheless, the provision of grief support to relatives is something that, as yet, is not fully consolidated. It has been noted that grief support for caregivers is included in most palliative care units, and is present in most areas of the country, but that the number of units found in any one given place does not necessarily bear any relation to the number of inhabitants. The high concentration of units in some areas and the lack of same in others leads to an imbalance in the support provided that is not appreciable if we only focus on the total number of centres. In addition to the amount of units per population, it is also important to ascertain the total number of professionals per unit and the number of people working in each speciality. In both cases, it can be seen that there is no correspondence with the ideal numbers proposed by Finlay,30 as there are fewer professionals per unit and head of population than expected and, there are also fewer psychologists, social workers and other specialists per team than recommended. It is important to consider the number of people in palliative care teams and grief support programs, however, it is even more important to see how they are organized. In most cases, grief support for relatives is not consolidated around one program with its own co-ordinator and specific tasks, as can be found in other countries. Rather, it forms just one part of the tasks of the palliative care team, and all the team members are involved in detecting people at risk. If specific intervention is necessary, it is mostly the psychologist who takes responsibility, or, as is commonly the case in Catalonia, the social worker.

Grief support characteristics Grief support in our survey shows an individual approach, concentrating on helping emotional aspects of the bereaved with an emphasis on informal assessment. These three characteristics correspond to our expectations about the support given to the emotional aspects, the use of instruments and non-standardized, informal criteria in the assessment. Some of these characteristics of grief support could be improved with a more efficient and effective service. This is especially true when considering the lack of human and economic resources available for providing support during the grieving period. Making the assessment more formal could lessen the difficulties experienced in determining which people are in need of help, aid the assessments once direct intervention with the relative is over prior to further follow-up, and contribute to establishing diagnostic criteria for complicated bereavement. However, although it is acknowledged that the subjective instruments allow for greater flexibility and give more importance to the experience of each professional,24 they do have the disadvantage of yielding more cases. From the empirical data, we have obtained a general overview of the characteristics of Spanish units and we can compare them to units from other countries. Thus, we can see that in the US and the UK,11,12 the percentage of units using formal instruments is higher than in Spain (77 and 26% compared to 8%). The individual-personal nature of grief support in Spain is in stark contrast to the Japanese method,16 which is of a more social, grouporientated nature. Furthermore, other differences are found in the type of professional who provides direct grief support. In some countries it is the nursing staff,11 14,16 the social worker,11 13,15,16 or the religious worker;15,16 in Spain it is, more frequently, the psychologist, and in Catalonia the social worker as well.

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P Yi et al. Assessment of results and the professionals future goals The general impression given by teams providing grief support for relatives of end-of-life patients in Spain, is that of a group of developing organizations, working informally, with almost no assessment of specific intervention and bereavement follow-up, and in need of systematizing and publishing their results. However, at the same time, they are aware of the importance and need for providing family attention within the framework of good palliative care. With regard to experience, palliative teams have been working in Spain for an average of six years, which is similar to other countries.11,12,16 We consider that any development in grief support programs for family members in Spain must be able to rely on a specific, direct organization to carry out the desired objectives, using a grief intervention model that follows the general guidelines Guide for Quality Criteria (Spanish Palliative Care Society), Standards for Bereavement Care (Irish Hospice Foundation 2002), Standards for Bereavement Care in the UK (National Bereavement Consortium 2001) and Guidelines for Bereavement Care in Hospice (National Hospice and Palliative Care Organization 2002) and which, at the same time, is adaptable to the individual nature of each unit. Currently, members of Spanish palliative teams assume responsibility for providing grief support to family members as just another part of everyday work, treating it in the same way as other tasks, without relying on a special co-ordinator. In any future program, it will be important to clearly set out the aims, duties and responsibilities in these cases. In our opinion, we consider the following future objectives as the most necessary: In the long-term (more than five years), there is a need to redefine the organizations raison de tre (mission) and to readjust the relationship between the professional, the post he/she holds and the standard working procedure (dynamic adjustments). In the short-term, there is a need for self-help groups, incorporating risk factors of complicated bereavement into the structure, and planning informative worksheets (technology). Furthermore, a grief support protocol is urgently needed in order to regulate working procedures (structure). These objectives coincide perfectly with the professionals stated goals, as found in the questionnaire. Future research must focus on these needs in order to put a national grief support program into practice, and thus improve palliative care in general that, in turn will benefit the whole public health system.

By comparing the techniques used by the professionals in providing support during bereavement and subsequent follow-up, it can be seen that the Spanish units mainly focus on one-to-one counseling and telephone contact, whereas in other countries, other strategies (groups, commemorative reunions, social get-togethers, letters, anniversary cards, courses, etc.) are used. It seems important to us to emphasize the telephone interview as a technical means of support while monitoring the grieving period, especially as it is so widespread, inexpensive and convenient. Some researchers,25 27 have used the telephone in a psychological and medical context, comparing it to other methods, such as the written postal interview and the computer-assisted selfinterview. They conclude that the answers given in a telephone interview scored higher for accuracy, honesty and convenience than a postal interview and the same as for a computer interview. The telephone interview has also been specifically used in the context of grief and coping, but has not been compared to other techniques.28,29

Grief support assessment Question 10 (In your experience, what are the most common diagnostic criteria for complicated bereavement?) was open-ended and referred specifically to the diagnostic criteria for complicated bereavement. Surprisingly, 65 of the answers made reference to risk factors of complicated bereavement; we, therefore, proceeded to carry out a separate analysis of the most commonly mentioned risk factors constituting this unexpected source of information. The confusion of these two concepts is very surprising, and using a personal characteristic of the bereaved, or other death-related issue, as a criterion for diagnosing complicated bereavement may be dangerous and have grave consequences when professional intervention is needed. A specific grief support program and training in the identification of risk cases, as proposed by the SECPAL in the Guide of Quality Criteria,31 should carefully consider the confusion between these two concepts. Another relevant point brought out by the results is how the criteria used to diagnose complicated bereavement were different according to the profession of the person completing the questionnaire. Furthermore, it was not only the diagnostic criteria of complicated bereavement that varied according to the persons profession, but also the risk factors. These results differ from those of Ellifrit et al .,32 who found that the risk factors used for complicated bereavement did not differ from profession to profession. Nevertheless, both studies coincide in the lack of social support for the bereaved as the risk factor most commonly mentioned by all the professionals.

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Grief support in Spain 527 Acknowledgements This authors acknowledge the support received from family members of patients in palliative care in Spain. This research was subsidized by the Escuela Valenciana de Estudios para la Salud (EVES) (Cod. 038/2001).
and palliative care in Japan. Palliat Med 2002; 16: 151 58. Rolls L, Payne S. Childhood bereavement services: a survey of UK provision. Palliat Med 2003; 17: 423 32. Centeno C, Herna ndez S, Flores L, Lo pez-Lara F, Directorio de cuidados paliativos 2000 . Sociedad Espan ola de Cuidados Paliativos, 2000. Worden JW. El tratamiento del duelo: Asesoramiento psicolo gico y terapia . Barcelona: Piados, 1997. Kubler-Rose F. On death and dying . New York: Macmillian, 1969. Schneider J. Stress loss and grief: Understanding their origins and growth potential . Baltimore: University Park Press. 1984. Pollock G. Mourning and adaptation. Int J Psychoanal 1961; 132: 146 49. Peiro JM. El modelo Amigo: marco contextualizador del desarrollo y la gestio n de recursos humanos en las organizaciones. Papel Psico l 1999, 72: 3 15. Parkes CM. Evaluation of a bereavement service. J Prev Psychiatry 1981; 1: 179 88. Ellen JM, Gurvey JE, Pasch L, Tschann J, Nanda JP, Catania J. A randomized comparison of A-CASI and phone interview to assess STD/HIV-related risk behaviours in teens. J Adolesc Health 2002; 31: 26 30. Burroughs TE, Waterman BM, Cira JC, Desikan R, Claiborne DW. Patient satisfaction measurement strategies: a comparison of phone and mail methods. Jt Comm J Qual Improv 2001; 27: 349 61. Calvet X, Bustamante E, Montserrat A, Roque M, Campo R, Gene E, et al . Validation of phone interview for follow-up in clinical trials on dyspepsia: evaluation of the Glasgow Dyspepsia Severity Score and a Likert-scale symptoms test. Eur J Gastroenterol Hepatol 2000; 12: 949 53. Von Suhr JC The sibling experience of ambiguous loss in families with a missing child: grief, coping, and supportseeking behaviours. Dissertation Abstracts International: Sec B: Sci Eng 2003; 64: 1511. Shackel SK. The effects of parental death during childhood on adult experience of God. Dissertation Abstracts International: Sec B: Sci Eng 2001; 61: 6149. Finlay I. UK strategies for palliative care. JR Soc Med 2001; 94: 437 41. Gomez-Batiste X, de la Mata I, Ferna ndez M, et al . Gu a de criterios de calidad en cuidados paliativos . Secpal 2002: 16. Ellifrit J, Nelson K, Walsh D. Complicated bereavement: a national survey of potential risk factors. Am J Hosp Palliat Care 2003; 20: 114 20.

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Appendix
Questionnaire on grief support provided to families of end-of-life patients Centre/team information Name of centre Address Tel/fax E-mail Team members Speciality Doctors Nurses Psychologists Social workers Volunteers Others. What?

No. of people

Information on person surveyed Name and surname: Profession: Post held: Instructions: The questionnaire is only an informative instrument, not for assessment purposes. None of the questionnaires will be used separately. The information will go towards understanding the current state of Spanish palliative care. Please answer the questions according to the job you are currently carrying out within the institution. More than one answer may be indicated. Thank you. Service 1. Does the team assist the families of terminal patients? Yes No No, but it plans to 2. Does it carry out family grief-related work? Yes No No, but it plans to 3. Who decides the family members that may need help in their grief ? 1 The doctor 1 The psychologist 1 The nursing staff 1 The social worker 1 Any of the team members without distinction 1 Consensus of agreement among the team members 1 Other 4. What instruments help to make decisions about the people who may need help in their grief ? 1 Questionnaire. Which? 1 Self-devised check-lists 1 One-to-one counseling 1 Systematic observation using check-lists 1 Clinical impression 1 Standardized instrument. Which? 1 Other. Which? 5. What criteria is used to predict grief-related problems in families of terminal patients? 1 Risk factor consideration 1 Analysis of family members adjustment to patients illness 1 Observation that a family member is too absorbed in their own thoughts or problems

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Grief support in Spain 529 1 Analysis of family members spoken expressions 1 Analysis of previous grief-related experiences and resources used to cope 1 Other 6. When does the intervention begin? 1 From first contact 1 During patients illness 1 After patients death 1 Adjustment during the process subsequent to the patients death 1 Other 7. What does the help given to the family members consist of ? 1 Information 1 Instrumental aid (help to carry out everyday activities and basic habits) 1 Emotional aid 1 Other 8. Do you use any of the following techniques? 1 Support groups 1 One-to-one counseling. On average, how long per person? 1 Written information on grief and affliction 1 Periodic social activities open to public participation. Such as? 1 Telephone contact 1 Postal contact 9. Who gives the help? 1 The doctor 1 The psychologist 1 The nursing staff 1 The social worker 1 The volunteer staff 1 Any of the team members without distinction 1 Other 10. What are the most common diagnostic criteria of complicated bereavement in your experience? 11 How is it decided when to end grief support? 1 Patient in the centre/hospital/institution dies or is discharged 1 Pre-determined number of sessions 1 Patient requests to stop 1 Patient is assessed 1 Other 12. Is there subsequent follow-up? Yes No Sometimes Another 13. What does the subsequent follow-up consist of ? 1 Visits 1 Communication by post 1 Communication by telephone 1 Others Team 14. Which people work with the grief of family members? 1 Team members 1 Speciality 1 Doctors 1 Nurses 1 Psychologists 1 Social workers 1 Volunteers 1 Others. What?

No. of people

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15. Approximately how much of your monthly workload is dedicated to family members grief ? (in hours) 16. Where do meetings with patients families take place? 1 Persons home 1 Hospital 1 Other place 17. Which member of the team is informed of the follow-up or of the results obtained working with the relatives of terminal patients? 1 The doctor 1 The psychologist 1 The nursing staff 1 The social worker 1 The volunteer staff 1 Any team member without distinction 1 Other 18. Is the service to the family members provided free of charge? Yes No 19. Are there any restrictions imposed on this service? Yes No 20. Is this service financially dependent on any organization? No Yes. Which? Associations 21. Does any connection exist between your centre or service and other non-governmental associations? No Yes. What? 22. Does the centre take part in seminars, congresses or other events? No Yes 23. Is there an association of family members connected to your centre in which the results of the research are discussed? No Yes. Which? Results 24. How long have you been working with the relatives of end-of-life patients? 25. Have you noticed any changes throughout this time? No Yes. What? 26. Have there been any changes in the grief support programmes during the time you have been working? No Yes. What? 27. How are the results of the interventions with family members assessed? 1 Questionnaires. Which? 1 Self-devised check-lists 1 Personal interview 1 Systematic observation using check-lists 1 Clinical impression 1 Standardized instrument. Which? 1 Others. Which? 28. How is the work protocol to be used with family members of end-of-life patients assessed? 29. What advantages have you found while providing grief support to family members? 30. What disadvantages have you found while providing grief support to family members? Systematization 31. Is there a written or published document on the work carried out with family members of terminal patients in your service? No Yes. Which?

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Grief support in Spain 531 Projects 32. What future developments do you have in mind? 33. What would you like to achieve in the next five years? 34. Would you like to make any additional observations? Set out briefly:

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