Literature Review on Bereavement and Bereavement Car - Book Summary - English literature, Summaries of English Literature

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Literature Review on Bereavement and Bereavement Care Joanna Briggs Collaborating Centre for Evidence-based Multi-professional Practice Faculty of Health and Social Care The Robert Gordon University, Aberdeen January 2006 Correspondence to: Dr Peter Wimpenny, Associate Director, The Joanna Briggs Collaborating Centre Faculty of Health and Social Care The Robert Gordon University Garthdee Aberdeen AB10 7QG [email protected] Tel 01224-262650 Fax 01224-262630 ii Key Messages in Perinatal Death .......................................................63 Chapter 6: Bereavement and Families.......................................... 64 Evidence Reviewed ..........................................................................67 Key Messages in Bereavement in Families...........................................68 Spousal Bereavement ......................................................................69 Evidence Reviewed ..........................................................................73 Key messages in Spousal Bereavement ..............................................74 Chapter 7: Older People............................................................. 75 Spousal loss in older people ..............................................................81 Grief in older people ........................................................................84 Evidence Reviewed ..........................................................................85 Key messages in Older People ...........................................................86 Chapter 8: Spiritual/Cultural aspects of Bereavement .................... 87 Evidence Reviewed ..........................................................................91 Key Messages in Spiritual/Cultural aspects of Bereavement ...................92 SECTION THREE: Specific Areas of Risk/Challenge................. 93 Chapter 9: Traumatic Deaths...................................................... 94 Trauma..........................................................................................94 Disasters........................................................................................96 Murder...........................................................................................97 Suicide...........................................................................................98 Evidence Reviewed ........................................................................ 101 Key Messages from Traumatic Deaths .............................................. 102 Chapter 10: HIV/AIDS ............................................................. 103 Evidence Reviewed ........................................................................ 106 Key Messages in HIV/AIDS ............................................................. 106 Chapter 11: Learning Disability ................................................. 107 Evidence Reviewed ........................................................................ 108 Key messages in Learning Disability ................................................. 109 SECTION 4: Interventions, care and education..................... 111 Chapter 12: Interventions ........................................................ 112 Emotion and Self Expression ........................................................... 113 Counselling and Psychotherapy........................................................ 114 iii Bereavement Groups ..................................................................... 115 Social Approaches ......................................................................... 115 Professional Approaches ................................................................. 118 Evidence Reviewed ........................................................................ 119 Key messages in Interventions ........................................................ 120 Chapter 13: Information for the Bereaved .................................. 122 Internal policy and procedure.......................................................... 122 Procedure for relatives ................................................................... 122 Using a generic framework ............................................................. 123 Respecting the death ..................................................................... 123 Postcode provision......................................................................... 123 Targeting groups ........................................................................... 124 Undertakers materials .................................................................... 125 Anything Research-based?.............................................................. 125 Contents ...................................................................................... 126 Format......................................................................................... 127 Quality and thinking out of the box .................................................. 127 Emotive feelings and issues ............................................................ 128 Key Messages from Information for the Bereaved............................... 129 Chapter 14: Community and Occupational Support ...................... 130 Organisation of services ................................................................. 132 Evidence Reviewed ........................................................................ 133 Key Messages in Community and Occupational Health ........................ 134 Chapter 15: Acute, Hospital Care .............................................. 135 A&E............................................................................................. 136 ICU ............................................................................................. 138 CCU............................................................................................. 139 Hospital care in general.................................................................. 140 Evidence Reviewed ........................................................................ 143 Key Messages in Acute, Hospital Care............................................... 144 Chapter 16: Cancer and Palliative Care ...................................... 145 Bereavement Services.................................................................... 145 Assessment and Intervention .......................................................... 150 iv Experience of Bereavement............................................................. 153 Factors influencing Bereavement Outcome ........................................ 155 Characteristics of the Bereaved ....................................................... 155 Relationship with the Deceased ....................................................... 156 Care-giving Experience................................................................... 157 Experience of terminal care............................................................. 157 Social Support and Family Functioning.............................................. 158 Preparation for and place of death ................................................... 158 Evidence Reviewed ........................................................................ 160 Key Messages in Cancer and Palliative Care....................................... 161 Chapter 17: Education of Health and Social Care professionals ...... 162 Provision of Education .................................................................... 163 Curriculum Content and Teaching .................................................... 164 Culture ........................................................................................ 168 Evidence Reviewed ........................................................................ 169 Key messages in Education and Professional Development .................. 170 SECTION 5: Conclusions ....................................................... 171 Chapter 18: Research Issues .................................................... 172 Key Messages in Research .............................................................. 175 Chapter 19: Overall Key Messages from the Reviewed Evidence .... 176 Chapter 20: Concluding remarks ............................................... 178 Reference List ........................................................................ 181 APPENDIX 1: Appraisal and Extraction Forms.............................. 225 APPENDIX 2: JBI Levels of Evidence .......................................... 239 APPENDIX 3: FAME Scale ......................................................... 241 APPENDIX 4: Advisory Group Members ...................................... 243 APPENDIX 5: Issues Raised with SEHD and Review Group ............ 245 vii Literature Review Group Members Alison Brown (AB) Lecturer, School of Nursing and Midwifery, The Robert Gordon University (RGU). Margaret Buchan (MB) Faculty of Health and Social Care Librarian, RGU Susan Copeland (SC) Senior Librarian, RGU Paul Dempster (PD) Research Assistant/PhD student, School of Applied Social Studies, RGU Maggie Grundy (MG) Senior Lecturer, School of Nursing and Midwifery, RGU Fiona Ramage (FR) Secretarial/Administrative support, RGU Rachel Unwin (RU) Seconded from post as Community Macmillan Nurse, NHS Grampian (Now Marie Curie Lecturer). Sylvia Wilcock (SW) Associate Head of School of Nursing and Midwifery and Director of the JBI Collaborating Centre. Peter Wimpenny (PW) Lecturer and Associate Director JBI Collaborating Centre Fiona Work (FW) Lecturer, School of Nursing and Midwifery, RGU viii 1 SECTION ONE: Introduction to Review and Methods This first section provides the basis for the literature review processes employed herein (Chapter 1). It then undertakes a brief introduction to the subject of bereavement (Chapter 2) in an attempt to provide the reader with some key definitions and a brief background to the topic. The next section (Chapter 3) moves more fully into the review by outlining the complications of grief that can occur to a small but significant group of those who are bereaved. Whilst all grief is distressing, it is this group who appear to be most at risk for ongoing distress and for whom risk factors may be discerned before or earlier in their grieving process. 4 Making decisions on breadth versus depth, is not simple and we have sought to satisfy something of both camps. An attempt to add a further quality dimension to the review was the engagement of an advisory group with members from systematic review bodies and experts in the field of bereavement (Appendix 4). We are grateful to them for their time, expertise and feedback at key points during the review. Any errors in the report are, of course, our own. Their initial perspective was that this was an enormous task, a perspective with hindsight we would not disagree. One of the other messages was that much of the material was at the bottom of the evidence tree and additionally there was significant material in books and older seminal papers that would not be included in the review. Papers were selected therefore, on the basis that they appeared to have most potential to address our questions; and key texts identified through reading were incorporated into the narrative summaries of each theme. The inclusion of material from the Handbook of Bereavement Research (Stroebe et al 2001c) is an obvious example. However, formal appraisal of such material was beyond the scope of the review. The appraisal process was then undertaken by all review group members working in pairs focusing on selected theme material. Appropriate appraisal instruments were used from the Joanna Briggs Institute (JBI) suite of tools, amended as appropriate, and also drawing on those used by the Scottish Intercollegiate Guidelines Network (SIGN 50), (Appendix 1). A 1-4 rating scale, amended from that developed by the JBI2 was used as a guide for appraisal (Appendix 2): ‘1’ reflects high quality evidence with small risk of bias, confounding factors or doubts of trustworthiness, whilst ‘4’ reflects evidence with a high risk of bias, confounding factors or doubts of trustworthiness. The rating scale is used alongside different forms of evidence that reflect feasibility, appropriateness, meaningfulness and effectiveness of any phenomenon of interest or intervention (see Appendix 2 http://www.joannabriggs.edu.au 5 3). It is a reflection of the range and type of evidence in this field that the majority of evidence was rated as level 3 or 4. This is not to suggest that evidence rated at 4 is not significant in terms of policy making or clinical practice. It is merely a reflection of the type of evidence that exists; its importance has to be assessed in the light of other factors. There is a consistent message throughout the topic of bereavement that there is little homogeneity across research and additionally there are difficulties in constructing research due to the nature of the topic. Following appraisal of theme material, a narrative for each theme was created with no reference to the level of evidence, albeit the accompanying ‘technical’ document contains such information. This form of evidence presentation is not unusual, particularly in the circumstances surrounding a broad review including both quantitative and qualitative evidence (Dixon- Woods 2005). It was considered important to present the literature in a form that allows the reader to gain a feel for the theme without making judgements about the level of evidence. Such judgements have become problematic for guideline bodies such as SIGN and NICE (National Institute of Clinical Excellence), as there is a tendency to focus on recommendations supported by level 1 evidence when these may not be the most important within that setting or context. There are moves at both national guideline bodies to diminish the link between levels of evidence and level of recommendation to prevent such, potentially inappropriate, judgements being made. The creation of the narratives in each theme was geared firstly to appraisal and then the development of key messages. This was undertaken by two members of the team for each theme, which ensured that appropriate appraisal was being undertaken and also the accompanying narrative represented the data or evidence extracted. It is noted that these narratives may be overly descriptive in an attempt to report the evidence in an objective manner. However, we did not set out to describe each paper, as per Cochrane review format or as presented in reviews, such as that undertaken by the Centre for the Advancement of Health (2003) as this was 6 not the remit for the review and in addition we considered this as unhelpful to the potential readers of the final report. Five questions were devised to assist in the appraisal and extraction process. These were: 1. What present knowledge and practices are identified as underpinning bereavement care? 2. In what ways are individuals and organisations involved in bereavement care? 3. What is the experience of bereavement? 4. What interventions are effective in bereavement care? 5. What are the outcomes of bereavement care? These questions formed a broad frame of reference, in addition to the specific objectives for the review: • explore published and grey literature including relevant evidence from the UK and other countries, and from a broad range of service organisations; • determine priorities for health services within this politically sensitive and multifaceted topic; • capture current knowledge, practice and public perception; • underpin and inform development in policy and practice in this area. The objectives and questions provided a guide to the type of literature to be reviewed, however, the breadth indicated by these resulted in considerable discussion on both inclusion and exclusion criteria. As the review was anticipated to update the perspectives offered by Everybody’s Death should Matter to Somebody (1991) a cut off date of 1990 was used. Earlier reference is included, but not reviewed, where the reviewers considered that it had relevance for the review. 9 From the 1888 papers the number was further reduced to 1408, with 687 full text copies being obtained through local libraries, electronic journals and interlibrary loans (235). The breakdown of these papers into themes, with the number of papers in each theme, is shown in Figure 2. Figure 2. Number of papers identified with each theme at commencement of appraisal process Exclusion occurred as papers were identified as duplicate or parallel publications; did not contribute to providing a perspective on the set objectives/questions; poor quality on appraisal; unable to access publication within the time scale or published before 1990. 10 Final identification of papers occurred through an ongoing discussion between at least two members of the review team (RU, PD or PW), and subsequent refining occurred with all members of the review team and comments from the advisory group. Amendments occurred to the themes as the review progressed. Managing this significant number of references was undertaken using RefWorks™ and EndNote™ (Version 8). Without such reference management systems the process for large reviews, such as this would be logistically difficult. In addition a call for other ‘grey’ materials was undertaken through a variety of different routes – letters to all Health Boards, Universities and Voluntary groups; emails to networks such as CHAIN (Contact, Help, Advice and Information Network) and JBI collaborating centres. A review of the informational type of literature was undertaken by PD and a separate synopsis of this has been developed (see Chapter 13). We also received a number of telephone calls and emails from a variety of individuals and organisations for which we are grateful as it assisted us to develop the thematic matrix. Other materials, such as policy documents, were incorporated into the narratives wherever possible. A database was developed using Microsoft Access™, to hold the appraisals and extractions from systematic/literature reviews and quantitative papers. The qualitative and text/opinion papers were appraised and data extracted. A final aspect of the review was a meeting held with representatives of the Scottish Executive Health Department to discuss the draft findings. A presentation by the review team was followed by discussion and feedback which we sought, wherever possible, to incorporate in the review. For completeness a brief note of the meeting and the issues raised are included in Appendix 5. One final aspect that we would also wish to report in this opening section is the schism between objectivity and subjectivity. On the whole our review process kept bereavement at a distance, the focus was on appraising and 11 extracting data from papers, it was an objective exercise. However, our engagement with some of the personal (subjective) material often touched us emotionally. We witnessed the impact at the individual level and whilst it is hard to fit to any particular level of evidence evokes strong feelings. If it can do this to a set of ‘objective’ minded reviewers we believe that the impact of death and the subsequent bereavement is very powerful and as such demands significant attention in the fields of health and social care particularly, but also in others such as education. The inevitability of death and the power of its impact are without doubt real, the extent and manner which our society deals with this appears to be changing. The ability of this review to effect changes at such a level is not possible. However, it is hoped that it will raise the profile of bereavement and identify key messages from the literature that may inform future policy and practice. An attempt to organise the material appraised and included in the review in a pathway format has been undertaken, from: grief and its complications in Section 1, through a review of bereavement across the lifespan (Section 2). Then an examination of specific but significant areas of bereavement in Section 3 followed by a closer inspection of particular health and social care settings (Section 4), has been undertaken. The final section (Section 5) highlights the issues surrounding research that were in evidence from the review of literature and maps out the overall key messages before reaching conclusions. 14 ones that reflect grief as an ongoing process of ‘continuing bonds’ (Klass, Silverman and Nickman 1996) and a continual move between loss and restoration (Stroebe and Schut 2001). There is also evidence of social and medical models impacting upon the evidence. According to Rhodes (2001) death is more than a biological act and has sociological and legal/political elements that influence any bereavement response. In addition there are also spiritual and psychological elements (Heyse-Moore 1996, Worden 1991). In all cases there are probably policy and training implications (Kastenbaum 1992, Ross 1997). Examining the literature on bereavement and bereavement care and potential impacts on policy and practice, highlights the physical, psychological, sociological and spiritual, cultural and economic elements which are required to ensure an holistic view. However, the review undertaken would suggest that a considerable amount of evidence is found, perhaps rightly so, in the psychological and sociological literature with lesser amounts in the other elements. Bonnano and Kaltman (2001), in a review of grief and bereavement, identify four common areas of disruption in the first year after bereavement: cognitive disorganisation, dysphoria, health deficits, and disruptions in social and occupational functioning. However, it must be noted from the outset that the majority of the bereaved, 90-95%, will ‘recover’ from their loss within a ‘reasonable’ time period (Centre for Advancement of Health 2003, Schut et al 2001). The definitions of ‘recover’ (Balk 2004) and ‘reasonable’ is difficult to specify as it will vary from individual to individual, although some broad time periods have been identified. It may also be the case for some, that recovery actually goes beyond pre loss levels of functioning (Lindstrom 2002), whilst for others the nominal time period for dealing with grief is over-long or not long enough. Parkes (1972) highlighted such variability in his classic studies of grief. He highlighted the antecedent, concurrent and subsequent factors which may impinge on the outcomes for the bereaved. It is to these outcomes that many of the papers reviewed refer, or investigate. 15 The time of death and subsequent bereavement is one which produces a wide variety of emotional reactions in the bereaved such as sadness, anger, separation distress, denial, loss of interest in self and social functioning, constant replaying of the death and events leading up to it. However, the evidence clearly shows that the presence of such strong feelings and diminution of quality of life does not equate to poor outcomes for the majority of people. Furthermore, it appears difficult to know if the expression or withholding of such strong emotions, influenced by cultural and spiritual factors, at the time of death and beyond is beneficial to the bereaved. What is also apparent, as Parkes and others have described, is that there are factors which may impact on the outcomes and some of these could be addressed by all types of practitioners in health and social care organisations, education settings, voluntary and community groups and be used to assist in assessing those most likely to develop physical, economic, social and mental health problems. There are also circumstances, such as in perinatal bereavement, where the specific contextual factors are also strong mediators of outcomes in addition to the other broader range of factors (Janssen et al 1996). There is of course a question of the need for intervention at all if grief is a ‘normal’ process from which most people will emerge (Raphael, Minkov and Dobson 2001). In addition the evidence of the effectiveness of interventions, is relatively weak (Jordan and Neimeyer 2003). However, there would appear to be many ‘interventions’ that do not fall within the clinical or medical use of the term that are applicable in this review, for example; preventative/preparative type work through education, communication skills for professionals and other practitioners at the time of death and after, social and community support, designated policies and procedures, role of volunteers and voluntary groups etc. The effectiveness of many of these ‘interventions’ is difficult to ascertain but there is no doubt, from the literature that they have an impact and are part of the overall picture of death, dying and bereavement. 16 The range of clinical interventions available suggests that no single approach will suit and may only be required by those people who develop ‘abnormal’ grief or associated anxiety, depression and post traumatic stress disorder. Identifying and targeting these individuals may be a useful strategy (Raphael, Minkov and Dobson 2001). If intervention for bereavement is required then an integrative approach appears to be favoured, that is pharmacotherapy, psychotherapy and education provided by a range of agencies. The following sections seek to illuminate the issues surrounding bereavement and bereavement care being raised in this background section. Because of the nature of death, dying and bereavement there will of course be overlap between the areas identified and covered. However, it is contended that this gives added strength to the overall key messages stated in Chapter 19. 19 and Prigerson (2004) identify an increased risk of suicide in those with complicated grief, which may increase, in ratio terms, over time. In addition to death by suicide it has been acknowledged that the bereaved are generally at higher risk of dying than non-bereaved (Stroebe et al 2001c), irrespective of type of bereavement but particularly for the younger bereaved; occurring during the early months after the loss. They may also, potentially, have a general lower quality of life in some areas of functioning (Silverman et al 2000). Perceived social support and life stressors may play a role in complicated grief (Ott 2003). Barry et al (2002) indicate that the preparedness for death may also impact on its development. Ellifritt et al (2003), from a hospice- based bereavement service perspective, indicate that in addition to social support, history of drug and alcohol abuse, poor coping skills, history of mental illness, child death and concurrent crisis are all significant factors. In addition, Boelen et al (2003b) identify that negative perceptions of grief reactions by the bereaved can impact on distress and discomfort and contribute to traumatic grief and depression. Such views are echoed in the Scott and White Grief study (Gamino and Sewell 2004) where high risk factors help identify those with higher measured distress levels and where those expressing positive themes of hope and recovery fared better than those expressing themes of pain and suffering. Jacobs and Prigerson (2000) indicate that a range of different psychotherapies (CBT, crisis intervention; brief dynamic psychotherapy; behaviour therapies; group therapy; other interpersonal psychotherapy group, individual therapy) have shown some evidence of effectiveness and may be appropriate but should be tailored to meet the individual’s needs, particularly those identified as at high risk. They also identify the contribution of self-help groups in their review (as do Zisook and Shuchter in 2001, with the older work of Vachon et al in 1980 identified as significant) and indicate that studies suggest that such groups can be just as effective if the group has: leadership; has been screened for suitability and training for interventions has occurred. It is also estimated that 80% of bereavement 20 care is now provided by the voluntary sector (London Bereavement Network 2001) and therefore, it appears appropriate to propose that the quality of such care is strengthened. A broader review by the Centre for Reviews and Dissemination (Baker 1997) reported limited effect of bereavement counselling, although again highlights the widow-to-widow programme (Vachon et al 1980) as effective and in addition the potential benefits of programmes for children. Cognitive behavioural therapy (CBT), in the present health care environment (managed health care and push for ‘brief’ psychotherapy), is viewed as ideal for treating individuals with complicated grief (Matthews and Marwit 2004). However, this is not necessarily supported by those who work in bereavement care and it is acknowledged that a need for further empirical support exists in this context and the possibility of using it in conjunction with other interventions. It is acknowledged that CBT, in general, has been shown to be effective in treating anxiety (including PTSD) and mood disorders. Piper et al (2001), identify benefits from time-limited, short-term group therapy, particularly from an interpretative perspective and in patients assessed with specific personality traits. In a follow up of the same patients, social support appears to improve after therapy (Ogrodniczuk et al 2003). There is a strong association between complicated and traumatic grief and anxiety and depression and it is considered a key factor in atypical grief reactions. Bonnano and Kaltman (2001) identify that all forms of depression and anxiety reduce over time in the bereaved although may be resistant to time in about 15% of widows and widowers. The DSM-IV (APA-IV 1994) convention is to wait for 2 months after the death before diagnosis of depression is made, although Zisook and Shuchter (2001) contest this time period as illogical and believe it delays appropriate diagnosis. In a review of the evidence for treatment of depression during bereavement they conclude that better assessment and adaptation of interventions should occur to identify and support those at risk more accurately (this could also include 21 prophylactic treatments). Treatment should consist of a combination of education, psychotherapy and pharmacotherapy. Reynolds et al (1999) (cited in Zisook and Shuchter 2001) identified the combination of medication (nortriptyline) and psychotherapy as associated with the highest rate of treatment completions. The type and duration of treatment would appear to be best based on individual requirements. A recent RCT (Shear 2005) highlights some benefit for complicated grief treatment over standard interpersonal psychotherapy, although both interventions show improvement. Prescribing of anxiolytics, for those who are bereaved, has been considered inappropriate (BNF 2005) although no evidence appears to exist of detrimental effect. Warner and Metcalfe (2001) found no evidence of a positive or negative effect of benzodiazepines on the course of bereavement within the first 6 months after death. 24 25 SECTION TWO: Bereavement across the Lifespan This section covers evidence that is related to bereavement throughout the lifespan. It commences with bereavement in children (Chapter 4) which combines related evidence in areas of adolescent bereavement, sibling bereavement, children dying in hospital and organ and tissue donation. It also seeks to raise the issue of bereavement in education settings, where it may be argued considerable impact and influence are apparent for children. Chapter 5 moves to examine bereavement in the context of the parent who loses a child, irrespective of age, with Chapter 6 moving this into the family context including evidence related to spousal loss. Spousal loss is further examined in Chapter 6 when evidence related to older people and bereavement is examined. This is an area where a considerable amount of evidence has naturally been accrued and issues related to gender are of particular significance. Gender, as an issue related to bereavement, surfaces throughout this section and highlights significant differences in grief, mourning and outcomes for males and females. The final chapter in this section is a synopsis of evidence related to spiritual and cultural aspects of bereavement. It was considered appropriate to include this chapter within the section as there are obvious interconnections between death and bereavement across the lifespan and associated spiritual/cultural factors that influence this process. 26 Chapter 4: Childhood Bereavement This synopsis of literature related to childhood bereavement is built around a small number of reviews of literature. Whilst none conform fully to the systematic review process, they cover considerable ground in this area and highlight some important key messages. Papers identified and included in these reviews were, on the whole, excluded from our review. The newest review by Ribbens McCarthy and Jessop (2005) is not strong in terms of effectiveness but is much stronger in terms of the applicability and meaningfulness aspects. The same is true of Lowton and Higginson’s (2002) review whilst Curtis and Newman (2001) seek to establish effectiveness of community based interventions. All the reviews highlight the difficulties and paucity of ‘good quality’ research, this is reflected further in the Centre for Advancement of Health (2003) review, which actually selected no empirical studies related to childhood bereavement. An extensive statement from the Work Group on Palliative Care for Children of the International Work Group on Death, Dying and Bereavement (Corr 1999) recognises that: all children grieve, although this may be in a different way to adults and may not be understood; children should, wherever possible, be included in experiences related to death and participate in the rituals and commemorations after a death; schools should have a role to play in supporting children who have been bereaved and also in the provision of education about death, dying and bereavement. Ribbens McCarthy and Jessop (2005) set out to review ‘relevant’ literature on five questions related to young people’s experiences, behavioural outcomes, the responsiveness of agencies, theoretical assumptions and research methodology factors. They acknowledge at the outset the extent and challenge of reviewing literature in this area and that the research evidence is ‘fraught with contradictions’ (p5). It is contended that the experience of bereavement for young people is not uncommon: it is estimated that about 2–6% of under 18 year olds have lost a parent or significant member of their 29 children through the use of group work approaches. Sandler et al (2003) also demonstrate improvement, particularly for those most at risk, by using a structured Family Bereavement Programme, although it is not clear if such a structured programme could transfer to ‘everyday’ practice. Brown (2004) from a very different perspective outlines a remembrance day programme run by the voluntary sector. This illustrates how a range of formal and informal approaches to assisting children to deal with bereavement can be helpful and useful for developing social networks. However, a review of bereavement programmes by Scheiderman et al (1994) concludes that there is no evidence of effectiveness and that it is likely that risk factors associated with class, pre-death family functioning, social support, age of the deceased and survivors and nature of death will be influential. Additionally, a later review by Curtis and Newman (2001) of community based interventions (outwith clinical settings) concludes that the inclusion of all bereaved children in support programmes remains unproven. Again they also advocate selective inclusion based on the type of known risk factors identified above. Support programmes may have to be developed to deal with the aftermath of disasters, such as Dunblane, when the important factor is for provision of interventions to be carefully planned to prevent overprovision (Black 1996). A framework for bereavement ‘services’ and interventions for children is suggested by Melvin and Lukeman (2000) which charts a flexible chronological based approach. Lloyd-Williams (1998) highlights the potential for primary care to achieve better services for bereaved children by ensuring that recording is accurate, all primary care staff have involvement and that there is the potential for a family appointment 8-12 weeks after death to assess coping. However, Lowton and Higginson (2002), highlight the gaps in provision in primary care and the mismatch between need and service provision. They draw on the UK research of Thompson and Payne (2000) who identified that children have a range of questions about death and dying that are related to factual, social and emotional information. Providing 30 appropriate responses to such questions, irrespective of setting, seems imperative as other sources of information are often not available. Corr (2004) identifies a range of death related literature that he considers useful to be read with or by children. His contention is that such literature can assist in raising and answering some of these crucial questions. Schuurman (2004) describes a range of selected literature for professionals and parents to assist them in supporting bereaved children. Both papers indicate the considerable range of literature available in this field for practitioners, parents and children to use individually or as part of a programme, intervention or by an individual. Websites, such as Cruse3 and Winston’s Wish4 are considered available but not widely known and limited in providing peer support. Provision of school based information and education for children is strongly endorsed, particularly as relevant curriculum materials are available. However, it would appear that many teachers may feel ill-equipped to handle this subject matter in the classroom. The Childhood Bereavement Network (CBN) provides a range of materials including guidelines for best practice by agencies offering bereavement support. The network seeks to develop a co- ordinated and collaborative approach to ensure quality information, guidance and support is available and is supported by over 220 organisations, although few are in Scotland specifically (Willis 2002). Willis mapped 47 groups offering open access support and a range of other networks but highlighted that at present there is no centralised collection of data to assess level of demand and service provided. 3 http://www.crusebereavementcare.org.uk 4 http://www.winstonswish.org.uk 31 Sibling loss The above synopsis has focused more on parental death but death of a sibling can have similar responses and outcomes, although sibling loss is not as common (Potts et al 1999). A literature review by Huntzinger (1995) has two recurrent threads; one that is focused on the relationship between the siblings and the consequences of the loss, and a second focusing on the loss of ‘attention’ because of the parent’s own grief reactions (Potts et al 1999, McCowan and Davies 1995). Robinson and Mahon (1997) highlight (although this is related more to adult siblings) that specific changes occur relating to self-perception and changes in world view, which will be governed by the context surrounding the child and the stage of their development, the family system and the nature of the death. The role of the surviving child may change, as may the relationships within the family and as such should be considered when dealing with sibling loss. More aggressive behaviour in the surviving child(ren) has been identified, particularly in younger children and has been interpreted as a need for attention (Mccown and Davies 1995). Similar analysis carried out by Birkenbaum (2000) highlights the need for better assessment of children to establish the problems associated with the death of a sibling. Potts et al (1999) demonstrate the value of a ‘Treasure Weekend’ as one means by which bereaved siblings can express their grief, remember their sister or brother and potentially move on. Such events may also have a positive impact on family functioning. 34 Adolescent Bereavement It is suggested, in the literature reviewed, that adolescents have specific needs when considering grief and bereavement. Some of the work already reviewed in the childhood bereavement section covers children up to the age of 16 or 18 and as such would cover the period of adolescence. However, there is a body of literature related specifically to adolescents and it is estimated that about 6% of 16 years olds will have lost a parent and 5% a sibling, with other losses, such as grandparents much higher (60-70%). Only a small number of adolescents, 7-8%, may never have experienced any form of loss through death (Harrison and Harrington 2001). Mearns (2000), from a palliative care perspective, highlights how adolescents suppress or deny their emotions more so than other children. She points out that due to this period of development being a time of physical and emotional change, specific attention needs to be paid to adolescent needs, commencing before death. The challenges to dealing with adolescents’ grief is noted by Balk (1996), who appears to be a key writer and researcher in this area. Understanding and supporting adolescents needs to take account of their developmental stage, their coping skills and the broader psychosocial culture in which it occurs. Christ et al (2002) clearly support the need to take account of developmental stage and coping skills. They provide areas of risk and recommendations and ‘what to say’ for professionals through the periods of terminal illness, death and family rituals and bereavement and reconstitution. They consider that clinicians need to appreciate the demands of death and bereavement and how this intersects with the child’s developmental stage. Servaty-Seib and Hayslip (2003) suggest that the rituals associated with death (viewing the body and facilitating grief) are not highly rated by adolescents in facilitating grief responses. They report that adolescents may have more issues related to changes in relationships and the way in which they feel they present to others, a finding supported by all the other papers in this theme. Such a finding would appear to reflect the stage of 35 development of these young people are at. Adolescents themselves however, may not see the need for professional help and the majority would use relatives and friends to talk with about their experience, although those with multiple losses may have more depressive symptoms and need to be targeted (Harrison and Harrington 2001). Because of their stage of development it may be considered that for adolescents, there is a potential positive dimension with enhanced spiritual development as they question death and search for meaning in life (Batten and Oltjenbruns 1999). Therefore addressing the needs of adolescents may demand a range of different or adolescent appropriate interventions, in addition to talk related therapies. For example, Dalton and Krout (2005) report the success of a short songwriting music therapy course and Kershaw (1998) the potential value of mind mapping. Evidence Reviewed The following table provides an overview of the type of evidence reviewed for this chapter. Type of Evidence Adolescence Papers Total Systematic or systematic type review Literature or literature type review or Mearns (2000) 1 Experimental/RCT Case Control/Cohort Dalton and Krout (2005) 1 Observational (no comparison group) Harrison and Harrington (2001), Servaty-seib and Hayslip (2002- 2003) 2 Mixed methods Qualitative Batten and Oltjenbruns (1999) 1 Opinion/text Balk (1996), Christ et al (2002), Kershaw (1998) 3 TOTAL 8 36 Key Messages in Adolescent Bereavement Adolescents may have specific needs (different to children or adults), particularly related to how they feel versus how they present themselves to others, which may be difficult to resolve. Such difficulties may benefit from adolescent appropriate interventions. Having a range of informal and formal supports particularly across home and friends and also within education, health and social care settings. There is a range of risk and protective factors that could be useful for assessing adolescents’ likelihood of coping successfully with loss, particularly of a parent or sibling. In addition, it is essential to view these in the light of an understanding of the stage of development. 39 may impact on retention on their course. However, a bereavement support programme (Balk 1998) for this group showed limited impact within the short term. Evidence Reviewed The following table provides an overview of the type of evidence reviewed for this chapter. Type of Evidence Bereavement and Educational Settings Papers Total Systematic or systematic type review Literature or literature type review Lowton and Higginson (2002) 1 Experimental/RCT Case Control/Cohort Balk et al (1998) 1 Observational (no comparison group) Holland (1997), Holland (2003) 2 Mixed methods Papadatou et al (2002) 1 Qualitative Lowton and Higginson (2003) 1 Opinion/text Balk (2001), Servaty-Seib et al (2003) 2 Books, Book Chapters, Reports Lowton et al (2004) 1 Pre 1990 papers Doka (1989) 1 TOTAL 10 40 Key Messages in Education Settings All schools and teachers need to have available resources (including training) to deal with bereavement in the school/classroom, this should include the availability of policies and procedures. Schools and teachers must be part of a network of agencies that would be available to support children before and after the death of a significant other. Death and bereavement should be part of the curriculum in primary and secondary settings. Universities may need to approach bereavement in different ways from that of primary and secondary schools. 41 Children in Hospital Whilst the extent of literature in this section is small and evidence level low, it was considered an important area to cover. This was so particularly following revelations at Alder Hey and Bristol, among others, and the subsequent inquiries (Royal Liverpool Children’s Inquiry, Redfern 2001; The Report of the Bristol Royal Infirmary Inquiry, Kennedy 2001), which highlighted poor practice, especially in relation to dealing with tissue and organ retention. The inquiry at Alder Hey raised the profile of consent to post mortem and organ retention and highlighted the role of clinicians in seeking consent, providing information and respecting parents’ wishes. The inquiry recommended the establishment of bereavement advisors to carry out this role, certificated through recognised training courses (Chapter 12). Sque, Long and Payne (2004) in a subsequent study to explore organ retention, outline the need for involvement and choice by families, a change of attitudes and education in health care organisations, support for a team approach, and flexibility across boundaries in respect of tissue and organ retention. They propose an interlocking model of bereavement services that involves information giving, referral processes, liaison between teams and appropriate interventions; all supported by practitioners and volunteers. Jennings (2002) also highlights the outcomes of the Alder Hey inquiry and the recommendation of appointing bereavement advisors to ensure that families have the opportunity to discuss, question and be informed of practical issues. She reports an evaluation of eight bereavement support posts with broad findings that clinical staff welcomed the support provided and believed that there were positive outcomes for care. If, as Stack (2003) reports, approximately 25% of deaths in post-neonatal children occur in Paediatric Intensive Care Units (PICUs) then it would seem appropriate to target such clinical areas. He reports on the publication of the Paediatric Intensive Care Society standards published in 2002. These standards provide practical advice for PICU staff and acknowledge a lack of structured training about bereavement care for medical or nursing staff (as 44 Key Messages in Children in Hospital There is a perceived need to establish some form(s) of educational provision, for both specialist bereavement advisors/support staff and more generally for all clinical staff who may encounter death, dying and bereavement in children. The provision of specific bereavement advisors may be beneficial but there is limited evidence of the effectiveness of such posts. Parents need good information and should be involved in all aspects of their child’s care. They may also wish to be present for some procedures that are at present closed off, such as resuscitation. 45 Organ and Tissue Donation It was difficult to know how to deal with the small number of papers initially identified and selected on organ and tissue donation. As the issues raised by Alder Hey and Bristol were related to children and have been highlighted in the childhood section it seemed appropriate to continue to this topic, albeit with awareness that organ and tissue donation can cover other adult areas of care. It became clear that some of the selected papers were dealing with the process of gaining consent and authorisation (for example Scott’s letter dated 24th November 2003 – see references). Providing any form of review on this process seemed unhelpful as there is obvious on-going work that is already well grounded and there is considerable writing on organ and tissue donation per se. However, organ and tissue donation does highlight the question of how consent may be given when relatives are about to be or are newly bereaved and their level of understanding, particularly if that death is sudden or unexpected (Brazier 2003). Sque et al (2005) demonstrate that the quality of hospital care can impact on the family’s decision to consent. Often consent is not given because families are not asked, although they later indicate they would have not minded being asked (Wellesley et al 1997). Crucial to the quality of the experience in Sque et al’s (2005) study were nurses and transplant co-ordinators with medical staff either enhancing or detracting from this baseline. One finding which emerged was the involvement of children in the decision making process. Children were present and actively participated in a third of evaluated events and at times the decision hinged on ‘what the child thought’. The question of impact and support for such children is thus raised but not answered. The grief trajectory for those evaluated by Sque et al (2005) appears to be, on the whole, ‘normal’ with a reduction in symptoms over time (see also Cleiren et al 1993). Evidence suggests that organ donation (or refusal) itself may have little impact on the subsequent grief process (Cleiren and Van Zoelen 2002). However, there are issues raised about information and the 46 way in which it is given (Cleiren and Van Zoelen 2002; see also Chapter 5: Parental (Perinatal) bereavement, in respect of post mortem). If information was correct, given in complementary ways and in a responsive manner then it had a lasting positive impact. The converse created a negative impact. Questions often remained that had not been asked due to the shock of bereavement, these were still important but answers were perceived as unavailable. Sque and Payne (1996) in an earlier study identify the emotionally charged nature of donor care and the constant conflict and resolution process that relatives work through related to the decision making surrounding organ donation. Knowing the person’s wishes can be helpful in this but the extent to which individuals consider making this clear may be limited (Tymstra et al 1992), although Elding and Scholes (2005) report a marked increase in the UK of those registered on the Organ Donor Register (20% of UK population). The model of dissonant loss proposed by Sque and Payne (1996) may be helpful for practitioners as it could help to illuminate this difficult time period and suggest appropriate and timely responses in caring for families/relatives. Suggestions include: communicating with appropriate non-clinical language, providing the information at the right time, and paying attention to reactions. Such approaches are similarly described by Cleiren and Van Zoelen (2002). Enhancing the communication skills of those involved in caring for the organ donor and relatives/family and those requesting organ donation would therefore seem essential. The use of the European Donor Hospital Education Programme (EDHEP) is reported by Morton et al (2000). This brief workshop based approach has been shown to enhance communication skills in breaking bad news and making a request for organ donation. Morton et al (2000) demonstrate such improvement in doctors but not nurses and this raises the question of either different needs within each professional group or perceived difference in role at this time, although the need for further education is not questioned. Education is identified as crucial by several recent papers (Sque, Long and Payne 2004, Elding and Scholes 2005; Matzo et al 2003) 49 Chapter 5: Parental Bereavement This chapter begins by dealing with bereavement in parents. The issue of perinatal bereavement is covered below as a distinct component. However, it is accepted that there are often overlaps and some of the research or reports related to the death of children cover stillbirth and neonates. A considerable range of writing and research in this area is apparent demonstrating the significant impact of children’s deaths on parents, identified as greater in intensity than the death of a partner or parent for adult children (Seecharam et al 2004; Murphy et al 2002) and having a significant impact on health (Stroebe et al 2001; Znoj and Keller 2002). Although the quantity of material is significant, the levels of evidence into which the majority falls are low. De Vries et al (1994) draw upon Rando’s (1986) work to highlight the range of influencing factors in determining grief responses to the death of a child, namely: the untimeliness of the death, the nature and quality of the lost relationship, the role the deceased played, the characteristics of the death and the social support system. They outline a range of issues which affect each of these factors and also point out the need to examine the loss against the age of the child (infant, young child or adult child) as these impact in different ways on ‘family’ functioning and development. Murray et al (2000) identify some similar, more specific risk factors: lack of perceived social support, ambivalent relationship with the baby, particularly traumatic circumstances surrounding the death, other difficult life circumstances, difficulty with coping in the past, problematic individual characteristics and unsatisfactory relationships within the nuclear family. If the death is sudden then parents may develop post-traumatic stress disorder (PTSD) (Janzen et al 2003-2004). Adolescents may be seen as being at particular risk of dying from accidents and suicide (Davies 2001, Murphy et al 2002). Davies, drawing on a range of evidence, suggests that parents of adolescents are at increased risk of responding to death outside 50 the ‘normal’ responses. Possibly due to the emotional and relationship changes occurring for the adolescent, and within the family at that time. However, much of the evidence offered fails to differentiate adolescents as a distinct group. In addition Dyregov et al (2003) suggest that the issue is one of traumatic death rather than one of age. Murphy et al (2003a) conclude that the type of traumatic death is also not that significant. Deaths in younger children (for example from SIDS) may also occur when parents are younger and have less established partnerships and coping skills. Irrespective of age, it appears that parents, in Western cultures, who lose an infant, suffer a reduced quality of life over a long period (Dyregov 1990). The Centre for Advancement of Health review (2003) indicate that it can take 3-4 years for parents to accept the death of a child. It also suggests that parental health post loss is diminished, particularly for fathers over the long term. The differences between men and women in respect of grief have been well reported with a variety of explanations related to different: attachment to the child, methods of coping, emotional responses and social situations (Dyregov 1990; Murphy et al 2002). The search for meaning and its reconstruction after the death is also considered an important factor (Wheeler 2001; Klass 1997) with keeping the memory of the child alive resulting in more positive changes. Davis et al (2000) question this search for meaning as appropriate, particularly when the events surrounding the death and the death itself ‘shatter deeply held worldviews’. Klass (1997) proposes that grief does not end with the severing of bonds with the child but continues through integration of the child into the parent’s life in a different way than before the death. Such changing perspectives on parental bereavement are noted by Davies (2004) who indicates that models of bereavement have moved from detachment from the dead to maintaining attachment in some form. The support for parents from health professionals is reported as variable (Dyregov 1990), the extent to which this has changed is questionable (see for example perinatal bereavement below). Janzen et al (2003-4) illustrate 51 parents’ experiences and their advice to professionals (Police, nurses, doctors, coroners, social workers/crisis counsellors, funeral directors and clergy). They divide this advice into three areas: instrumental assistance (e.g providing access, allowing time, respecting decisions), provision of information (e.g details of death, what to expect and do, rituals and memorials) and compassion and empathy (e.g give control, actively listen, be present, respect for the child’s body, respect faith). One parent stated ‘It is amazing what an impact the actions/reactions of others can have during thris traumatic and very vulnerable time. I remember very clearly the things that were said and done which were comforting. I remember just as clearly, in fact, perhaps more clearly, the things that were said and done which were hurtful and upsetting’. This illustrates the impact of professionals at the time of death and afterwards and the need for better training and education across professional groups (a finding supported by Oliver et al 2001). Murray et al (2000) describe an intervention to assist parents to adjust to the loss (‘normal’ grief) using an Australian programme known as An Ache in their Hearts. This well-considered controlled study using a trained grief worker and validated resources demonstrated that parents do benefit from such intervention and those at most risk are likely to benefit most. Differences in time for benefit were noted between mothers and fathers, with mothers benefiting earlier than fathers, again suggesting different patterns of grief for men and women. Although not confined to parents, Schut, Stroebe, van den Bout and Terheggen (2001) indicate that men may benefit from interventions that help them to express their grief, mothers are also more likely to attend grief support groups (Laasko and Paunonen-Ilmonen 2002) and social support, of all types, can have an impact on bereavement (Thuen 1997). Rowa-Dewar (2002) in a review of interventions, indicates that they should be targeted at parents who are at high risk, rather than any blanket coverage, taking account of individual and gender issues. The studies by Laasko and Paunonen-Ilmonen (2002) and Thuen (1997) highlight the potential cultural differences between Scandinavia and the US and the impact this may have on any comparison of results. (Many other 54 Evidence Reviewed The following table provides an overview of the type of evidence reviewed for this chapter. Type of Evidence Bereavement in Parents Papers Total Systematic or systematic type review Centre for Advancement of Health (2003), Rowa-Dewar (2002) 2 Literature or literature type review Davies (2004), DeVries et al (1994), Dyregrov (1990), Wing et al (2001) 4 Experimental/RCT Case Control/Cohort Znoj and Keller (2002), Murray et al (2000) 2 Observational (no comparison group) Bonanno et al (2005), Davis et al (2000), Dente et al (1996), Dyregrov et al (2003), Geron et al (2003), Murphy et al (2002), Murphy et al (2003a), Oliver et al (2001), Schwab (1996), Seecharan et al (2004), Thuen F(1997) 12 Mixed methods Qualitative Janzen et al (2003-2004), Klass (1997), Laasko and Paunonen-Ilmonen (2002), Malkinson and Bar-Tur (1998), Riches and Dawson (1996), Wheeler (2001) 6 Opinion/text Davies (2001) 1 Books, Book Chapters and Reports etc Rando (1986), Schut et al (2001), Stroebe et al (2001) 3 TOTAL 30 55 Key Messages in Parental Bereavement There is evidence of a range of factors that influence grief and bereavement in parents, which need to be assessed and addressed by all professional groups who may deal with death and dying in children. Co-ordinated interventions using validated programmes of support and trained staff may make a difference to the trajectories of normal grief and reduce the likelihood of complicated grief. Self-help groups can be beneficial for parents and they need to be guided and given appropriate information. Good quality information should be available for parents, that informs them of what is happening/happened to their child and practical issues and contacts after the death. Identification and follow up of parents, particularly those who experience a sudden and traumatic death should be developed and co-ordinated within health and social care. Education for health and social care professionals, voluntary agencies and others should be available. 56 Perinatal Death We identified, and initially selected, a considerable number of publications in this area (42). The presence of a negative Cochrane review on interventions suggested that we might need to incorporate a greater range of literature if any key messages were going to be identified. Additionally, other significant papers became apparent early in the review of this area and where possible were accessed. The considerable number of papers exploring, describing and researching perinatal loss may be due to an increasing interest in this subject in Western countries, as family size diminishes and the loss of a baby becomes increasingly significant. The work of Kennell and Klaus (1970) provides an historical marker for many of the papers reviewed and suggests that research and writing in this area has only developed significantly since then. The types of death included range from conception to the first month after birth (Rybarik 2000) consisting of early pregnancy loss (miscarriage) and late pregnancy loss (stillbirth, perinatal loss, neonatal death) (Janssen et al 1996). However, not all are recorded (Lovell 2001) and as McCreight (2004) and Lovell (2001) note there may be hospital based and within hospital differences related to dealing with the outcomes from early loss, although this may have changed since Redfern (2001) and Kennedy (2001) reported. In 2003, 682 deaths were notified to the Scottish Stillbirth and Infant Death (SSBID) Survey (compared with 672 in 2002), comprising: • 121 late foetal deaths (infants born dead at 20-23 weeks of pregnancy or earlier in pregnancy if the birthweight is 500g or more); • 296 stillbirths (5.6 per 1,000 total births); • 178 neonatal deaths (deaths in the first four weeks of life)( 3.4 per 1,000 live births); and • 87 post-neonatal deaths (deaths after the first four weeks but before the end of the first year of life)( 1.7 per 1,000 live births. 88% occurred before six months of age with SIDS accounting for 42% of deaths). 59 However, there is evidence of considerable variation in the way mothers grieve and search for meaning (The Centre for Advancement of Health 2003). Validating and remembering the loss may assist in this process through photographs, mementos, foot and hand prints, locks of hair and receiving blankets and attending funerals and memorial services (Bartellas and Van Aerde 2003, Gensch and Midland 2000) Gensch and Midland (2000), amongst others, are emphatic in promoting the option to see and hold the dead baby, however, more recent research by Hughes et al (2002) highlights the potential negative outcomes that such a ‘forced’ choice can have on women. The same may be true of the other validating and remembering approaches. These are also questioned by Lundqvist and Nilstun (1998) who describe the dilemmas for nurses in neonatal ICUs when parents are reluctant or refuse to touch or hold their dead baby. In the same Swedish context, Saflund (2004) finds no such negative perspectives. Although no measurement of outcomes is undertaken parents reported the value of holding and spending time with the dead baby. Whilst there is some questioning of such approaches a further consideration that may impact on such practice is that of culture and religion, which needs to be understood and addressed by staff (Hebert 1998). On a more practical note, Mander and Marshall (2003), taking an historical perspective on the photograph/picture for stillbirths or neonates, highlight the need for quality in the photography, a factor probably not incorporated in many midwifery programmes. Cultural and religious differences are particularly important in relation to perinatal deaths as different rituals and relationships exist. Lovell (2001) identifies a lack of religious engagement with stillbirth and miscarriage which often results in parents gaining little spiritual support from this direction. Hsu (2004), Chan (2003) and Van and Meleis (2003) all provide examples of different cultural, religious and ethnic factors that impact on perinatal death. Pector (2002) in a fascinating review of twins highlights, from a cross cultural perspective, the impact of twin deaths and how this may create disenfranchised grief for parents if one twin is lost and belief that the other 60 twin may have the spirit of the deceased. Pector (2004) continues to examine loss in multiple births in a western context, through on-line interviews with those who have experienced loss following multiple births. The findings suggest that there are common issues to any single birth loss but the extent of decision making will be greater in multiple loss as parents may have to juggle feelings and decisions. Within the perinatal bereavement literature there is also a distinctive component related to men. Janssen et al (1996) highlighted the potential for delayed grief in men and chronic grief because of lessened interventions at all points (Lasker and Toedter 1994). McCreight (2004) and Puddifoot and Johnson (1997) illuminate these through qualitative studies and consider that the present societal, health care organisations and voluntary group processes and procedures do not assist men to grieve and need to be addressed. Puddifoot and Johnson (1997) graphically illustrate the lack of engagement in the health care setting. Alderman et al (1998) also illustrate the different experience of grief in male partners and highlight the need for this to be considered more fully. Perhaps any consideration of male or female experiences should be within a family context. Whilst attention has been paid to women and some to men, less has been so to siblings and grandparents. Oikenen and Brownlee (2002) reviewed such work and describe the potential benefits of family therapy. As grieving usually goes on in some form of family unit, different ‘stories’ of each family member can be helpful to share to develop understanding of each others’ loss and subsequent support. The final significant group to be considered in the selected literature is adolescents. Whilst adolescence and bereavement is dealt with more fully in Childhood bereavement (Chapter 4), there are significant factors identifying this group as at particular risk, with perinatal loss being high in this age group (US figures). Welch and Bergen (2000) describe the multiple layers of disenfranchised grief (from Doka 1989) that adolescents will experience. They contend that due to the emotional, physical and social changes 61 occurring in adolescents that they need specific age-appropriate support. Additionally there would appear to limited information and education to assist these individuals. Irrespective of type of loss it places a heavy demand on staff. To provide good quality care it is suggested that colleagues and the organisation need to be supportive (Moulder 1999). The provision of education is important but must take into account the professional’s own attitudes and reactions. Assessing their level or stage of development is, Askey and Moss (2001) state, essential so that an appropriate programme for learning can be implemented. 64 Chapter 6: Bereavement and Families Kissane and Bloch (1994) defined family loss as a loss of one of its members, whether a nuclear or extended family unit. Most of the studies of families in this section fulfil these criteria, with no same sex family units. In their Melbourne study of 150 families, Kissane et al (1996) stated that five types of families emerged from their data when they measured dimensions of cohesiveness, conflict and expressiveness, using their Family Environment Scale. Two types were identified as dysfunctional; hostile families (because of their high conflict, low cohesiveness, poor expression) and sullen families (who presented with more moderate findings than the hostile type). At the beginning of the study the incidence of the two dysfunctional groups were as high as 30% at six weeks after the loss; however by the 13 months stage, the numbers had reduced to 15%. Termed the intermediate type, 26% presented with midrange cohesiveness, low control and low achievement of orientation. Although no age or differences were found in their family types, the hostile families had an over-representation of off-spring. Kissane and Bloch (1994) concluded that it was possible to identify those at-risk families that are dysfunctional, by screening families using the family relationship index of the Family Environment Scale. Dimensions of cohesiveness, conflict and expressiveness were themes reflected throughout all the studies, although a variation of the terms were found. Traylor et al (2003) in their longitudinal study with 63 participants stated that families who appeared to present with more awareness of their emotions and demonstrated an ability to express these emotions with each other reported less intense grief than stoic families. If the family perceived greater cohesiveness and communicated more, then this led to less grief symptoms. A need for families to communicate to share information, ideas, values and beliefs is needed to reduce isolation within the family unit (Fletcher 2002). In their conclusion, Traylor et al (2003) suggested that 65 having some knowledge of a family’s structure and processes could potentially help predict a family’s grief pattern after a death has occurred. No differences were found in their study between spouses’ death and parental death. A Dutch study of bereaved family members and close friends of terminally ill patients, compared 189 family members whose relative or friend had died from euthanasia with 316 whose relative or friend had died from natural cases (Swarte et al 2003). Swarte et al (2003) found the openness shown in the euthanasia families resulted in the families’ ability to cope more effectively. Kissane and Bloch (1994) concluded similarly in their literature review of family grief over the previous 25 years. Resolution of grief is more effective if a family demonstrates cohesiveness, mutual support, clear communication, emotional expressiveness and have an ability to work through and deal with conflict and adaptability. Unfortunately, the review did not demonstrate any rigour in their systematic approach nor defined search terms. Looking at predictors of mild anxiety in the weeks before bereavement Higginson and Priest (1996), in their sample of 302 carers in the South of England, stated that there were predictors of anxiety in the weeks before a family’s bereavement. Families with a patient who was aged below 45, was disabled or was married were clear predictors. No gender differences were found between husbands or wives. Individuals whose family member had breast cancer were twice as likely to present with anxiety as were individuals whose family member had gastro-intestinal cancer. A small but significant correlation between the increased duration of time the patient was using palliative services suggested that an early referral to palliative services could have a positive impact on a family’s anxiety. Professionals should target high risk families who have been caring for younger members, disabled members and married members. Brazil et al (2002), in a retrospective cohort study of 151 caregivers of bereaved families, reported the home as the preferred location for the family 66 member’s death. They reported that caregivers whose family member died at home fared better than caregivers whose family member had died in an institutional setting. Providing supportive services, which enable home deaths, was emphasised to ensure better health outcomes for the carers left behind. Teno et al (2001) report similar findings in a hospice setting with participants reporting significantly fewer problems with medical care, feeling happier with the quality of care and higher self-efficacy in caring than those in the acute setting. However, although 88.5% of those in hospice care felt informed about the care given to their family member in their last week of life, 1 in 5 felt there was a problem with the co-ordination of this care. Financial issues from the cost of caring were believed to be prevalent in families whose child had died (Corden et al 2002a; 2002b). Overall the cost of caring for a sick or disabled child, the cost of the funeral and the cessation of social security benefits (as much as 72%) after the child died had a serious financial impact on their lives. Families who had been caring for the child’s final days and claiming social assistance had to suddenly seek employment, which was stressful, as the family were also trying to re-group after the death. However, those who had continued to work, having gone back to work soon after the funeral, retrospectively reflected it had been a good decision for them. Co-ordination of services and appropriate receipt of social security benefits was a major issue identified by Cordon et al (2002a; 2002b) and few parents had received any financial support or advice. Findings of both studies suggested that the financial impact of caring for a sick or disabled child had the potential to remain with the family long after the death. Financial advice and support was needed to support such vulnerable families, which the authors felt could be an integral part of bereavement counselling process. Although a complex process, the authors felt the benefits could have a profound psychological impact on the families’ lives. Overall the majority of literature in this section fell within the lower end of 3 on the JBI scale. Although Kissane et al (1994) suggested that 69 Spousal Bereavement The majority of the studies on spousal bereavement had a strong bias towards widows and only one explored gay conjugal relationships (Nolen- Hoeksema et al 1997). The remaining studies had a nominal number of widowers included in their samples and were mainly at Level 3 or 4 on the evidence ladder. Older widows and widowers are dealt with in the older people section of this report (Chapter 7). Some of the studies incorporated numerous tools as an integral part of their research process, which made interpretation of the data time-consuming, cumbersome and demanding for the participants. Although no firm conclusions about who suffers more can be made within this sample of papers, post bereavement risk, in terms of mortality, Stroebe et al (2001) suggest it may be greater for widowers (compared to married men) than widows (compared to married women). Defined, the word spouse usually refers to a husband or wife through marriage, however within this section it is also used interchangeably as a term for an unmarried partner, which included one study of same sex partners (Nolen-Hoeksema et al 1997). The death of a spouse has been found to be one of the most stressful events in an individual’s life and most of the studies demonstrated that the majority of widows and widowers grieve the death of their spouse (Zisook and Schucter 1991, Kaunonen et al 2000, and Bonanno et al 2002). Symptoms of stress are reported to decrease over time, although can be most intense immediately after the death. (Avis et al 1991; Lieberman and Yalom 1992; Hyrkas et al 1997). Zisook and Schucter (1991) in their American study of 250 widows and 100 widowers suggested that a sudden or unexpected death was related to more intense grief at this early stage but was no longer apparent at the seven month stage. Due to the strong bias towards widows, it was difficult to draw conclusions about which gender in spousal loss suffered more. Most of the studies suggested that the death of a spouse had a stronger effect on mortality and/or morbidity for widowers than it did for widows (Martikainen and Valkonen 1996; Martikainen and Valkonen 1998; Bauer and Bonanno 2001). 70 In contrast, Manor and Eisenbach (2003) found a 10% increase in mortality for widows in the first and second year post bereavement. Studies agreed the younger widow or widower were more vulnerable (Zisook and Schucter 1991; Bauer and Bonanno 2001; Powers et al 1994) as well as those individuals in the lower end of the social spectrum (Martikainen and Valkonen 1998). Younger widows and widowers exhibited increased psychopathy compared to those in the older age groups (Zisook and Schucter 1991). Comparing 242 widows and 76 widowers, Kaunonen et al (2000), in their Finnish study, felt 26% of widows and widowers worried how to survive. 18% of widows worried about illness and death compared to 10% of widowers. Loneliness was felt by 17% of widows and 26% of widowers, and the loss of their relationship and the life they would have had with the deceased worried 12% of widows and 9% of widowers. Statistically, the only difference reported was the increased incidence of panic behaviour felt by widows, especially related to performing new tasks such as managing their financial affairs. Zisook and Schucter (1991) report similar findings, reporting that widows demonstrated more anxiety than the widowers, with the nature of the marital relationship not a significant factor. Exploring the nature of the marital relationship, a Canadian study of widows and widowers, reported that secure attached individuals were less angry, less socially isolated, less guilty, had less death anxiety, less somatic symptoms, less despair, less depersonalisation and ruminating. Secure individuals reminisced about the deceased more than insecure people. The authors concluded that attachment style had an effect on spousal grief. Bonanno et al (2002) suggested that the clearest predictor of grief was excessive dependency on the relationship. However, no significant differences were found with conflict and ambivalence towards the spouse in most of the groups in their study. Although, the chronically depressed group in the study were reported as being less positive about their spouse and marriage. A study by Field et al (2003) found that the greater the continuing bonds were after the death of a spouse, the greater the severity of the grief. When a greater satisfaction was reported by the participants about the relationship 71 prior to the death, the authors concluded that it was predictive of a higher continuing bond with the deceased. Some of the continuing bonds remained long after the death. Hyrkas et al (1997) in a study of Finnish widows and widowers suggested that widowers who had lost their spouse more than two years previously, displayed feelings of blame and anger, more than the widows. There was no significant difference, however, between the two genders for those who lost their spouse less than two years prior to the study. Manor and Eisenbackh (2003) also found no differences between the genders in their longitudinal mortality study in Israel. When considering suffering, Zisook and Schucter (1991) found that most of the widows and widowers had a depressive episode at some time during the seven months after their bereavement and that this episode did not begin until some time after the first months of bereavement. A quarter of their sample met the DSM-III category for clinical depression. Bonanno et al (2004) found nearly half of their sample showed little or no depressive symptoms and that 10% actually had an improvement in their mental health following their loss, the remainder showed low levels of depression even before the bereavement. Therefore it appears before diagnosing chronic (complicated) grief after spousal loss, it is important to first define the difference between chronic (complicated) grief and chronic depression, which may have commenced before the bereavement (Bonanno et al 2002). Bonanno et al (2002) also found, in their prospective longitudinal study of widowers and widows that most of the sample (90%) were captured into five conceptually relevant patterns: common grief (11%), chronic grief (16%), resilient (46%), chronic depression (8 %) and depressed-improved (10%). Overall, the most frequent bereavement pattern was the low depression resilient pattern. Each group reported at least some grief symptoms at 6 months post-loss, which demonstrated a decline with time; however the resilient individuals had fewer grief symptoms than all the other groups except for the depressed-improved. By 18 month post-loss the resilient, 74 Key messages in Spousal Bereavement Attention should be paid to the whole family in the bereavement process, with consideration by bereavement and support agencies in how to facilitate family and friends as mechanisms for social support to the bereaved. Support services should observe that symptoms of grief are reported by families to decrease over time, although can present intensely immediately after the death of a spouse. Practitioners should be aware of how important reminiscing is to widows and widowers. Less secure individuals tend to reminisce less. Services should provide a primary preventative focus of care for high-risk and high-distress individuals, using a systematic assessment that identifies high risk factors. Education is suggested for the bereaved and their potential support providers incorporating the diverse forms that grief may take. 75 Chapter 7: Older People A number of aspects become apparent when looking at the literature surrounding older people. There is not really a consensus on what constitutes old age (ages ranged from 50 to over 80 in the studies examined). Similarly the boundaries are becoming increasingly blurred as to what constitutes care (and where it is given). This is not helped by fragmentary research, which does not collect a wide enough range of experiences from which to draw good practice. Much of the work is theoretical or negative, highlighting a lack of care. Two areas of focus that dominate the research are spousal loss and grief. The literature discusses the concept of residence and what constitutes a home. Gott et al (2004) examines concepts of what a home is from the perspective of older people. Whilst older people see the ‘home’ as an essential part of a good death it is possible that later in the dying trajectory they would prefer to be cared for in a different place. Indeed, Bond et al (2003) suggest that the yielding of care of individuals with dementia and their subsequent death has a positive effect on the bereaved in relation to their health status, psychological well being and activity participation, which would suggest that for some elderly the relinquishment to care establishments may be a positive intervention for those bereaved. In addition, Ryan (1992) found a comparatively reduced death rate in those who had their loved ones admitted to care establishments, suggesting that relinquishing of care can be a positive event. Bass and Bowman (1990) agree that by targeting interventions prior to admission then the support of the bereaved is greatly increased. Death in institutions can be described as not homely, because family members are cared for by professional strangers. This apparently creates fewer burdens on family but also reinforces the idea that ‘proper care’ cannot be provided at home. To counteract this, workers may adopt the metaphor of family so that ‘caregiving becomes more meaningful when professional 76 distance is weakened and residents are humanized’, Moss et al (2003), p 293. Bass and Bowman (1990) suggest that the greater the care-giving strain on an individual prior to bereavement then the greater the strain on the individual post bereavement. To counter this they suggest that interventions should commence pre-death to relieve the burden of care and that relinquishment of care to care homes is not the only option. By entering into a partnership with the carer to maintain the dying individual at home perhaps the suggestion of care in the home as being ‘improper’ as suggested by Moss et al (2003) can be addressed. Cotter et al (2004) also examine life within care institutions and find that much of the research is fragmentary in that it looks from a single perspective or methodology, which in fact hides aspects of other people’s loss within these institutions. Current research results in an incomplete picture being presented. Having examined a wide variety of research they find that often there are divisions within the literature which result in only partial analysis of larger experiences. In one of a number of papers and chapters (See: Katz et al 2000 also Komaromy 2000, Katz and Peace 2003 and Katz et al 2001) which explore an earlier report, Katz et al (2000) examine palliative care provision within a handful of English care homes. This mixed method study finds that homes do not have uniform policies for dealing with bereavement, or in fact for supporting dying residents. A lack of support for bereaved families and staff may be exacerbated by the fact that often staff do not have the necessary skills or training to be able to implement proper support. Within practicing aged care physicians, surveyed by Boyatiz et al (2003), lack of skills was not seen as an issue however the participants did admit to having inadequate preparation for dealing with the bereaved. They did not recognise, however, that they should provide such support to the bereaved, as the deceased’s physician. Rather they supported the idea that there 79 religiosity is not a factor in the anxiety they feel. However, gender has also been highlighted in several other studies discussed in this review (Bennett 1998, Fitzpatrick 1998). Fitzpatrick (1998) focuses on gender issues in bereavement and examines men’s reactions to death and dying, in terms of the effects on stress and health arguing that health is affected by stressful life events and men are more likely to encounter higher rates of psychological and physical disorders as a result. These ideas which are supported by Bowling (1994), Byrne & Raphael (1997), Bennett (1998) and Li (1995), who all found greater incidence of mental health decline, depression and risk of suicide ideation in older males. For men the death of a parent, child or other close relation is likely to be felt in a similar way to the death of a spouse. What seems to be clear is that the processes of bereavement may be different for men from those for women, in that men are more susceptible, however, Bennett (1998) points out that the depression in males may be linked to the change to singlehood and the adaptation that this creates as much as the bereavement. It is clearly the case that for older people loneliness is a major factor in their grieving process. Much research deals with an older population which is under 75 years. In fact mean scores can be considerably less (Harwood 2001). Possibly another way to differentiate the differing needs of older people is to adopt the approach by Hegge and Fischer (2000), who separate the 60 plus age group into two: the ‘young old’, or seniors (60-74 years), and the ‘old old’, or elderly (75-90 years). From their research they found that there are differences between these groups in terms of grief. Seniors may still have an effective social support network in place in the community, being able to draw upon family in the first instance and then friends later. However, older people are more likely to have witnessed the institutional death of a loved one, which could hasten grief, in addition to experiencing anticipatory grief prior to death. Hegge and Fischer (2000) also reflect on the range of multiple losses likely to be experienced within these groups. 80 This age difference becomes apparent in much of the research with differences in grief reactions being explained through age. Xavier et al (2002) in their study of over 80s found that the presence of grief in this age group was not associated with depression or generalized anxiety as is commonly believed but it was however, linked with age related cognitive decline. Lalive d’Epinay et al (2003) agreed that there was no link in this aged group between grief and depression; moreover they found no links between grief and health either physical, functional or emotional. Whilst Lichtenstein et al found that widows over the age of 80 years had the best psychological health of widows. This implies that the impact of grief on the ‘old’ old is not as significant a factor as expected. This lack of a link with depression in the ‘old’ old however, is contradicted by Turvey et al (1999) who found higher rates of depression in the older subjects, and in the newly bereaved found depression to be up to 9 times higher than non-bereaved individuals. Schulz et al (2001) suggest that the depression is linked with the strain of care giving prior to death. However, with much of the research there is no consistency in groups, methods of assessment and variables. As a consequence many of the findings in this area are contradictory. 81 Spousal loss in older people The following quote summarizes a mood within research, as it tries to reclaim death dying and bereavement issues; ‘We believe that clinical lore which medicalises grief projects a somewhat distorted picture, especially in that it is underpinned by an analogy to physical trauma from which the successful and expected outcome is “full recovery”. If a medical analogy is to apply, then we suggest that metaphors of “wounds”, “blows”, or disease should be replaced by that of amputation. Not only does that fit many peoples subjective imagery…but it also makes clear that a loss is a loss and it is permanent, however well adapted to or compensated for’. Bennett and Bennett (2001), p248. The focus here is on spousal loss, where a partnership ends after one or other dies. The description of loss being permanent, where someone loses part of themselves is possibly most pertinent in the area of spousal loss, which makes up a large body of literature in the area of older people and bereavement. Where older people have a monopoly over death can mean that bereavement becomes an issue for spouses and partners. Where women outlive men, bereavement can also be seen as a gendered issue Parkes (1997). Death also affects the family as a unit (and as individuals) in different ways ; as Abeles et al (2004) points out children of a parent who has died are likely to be mature adults, possibly with families of their own. Kivela et al (1998) in their study looked at the loss of a parent in youth and its impact on old age. They found that the loss of a mother in males under 20 and the loss of a father in females under 20 may be a predictor of depression in old age. They suggest that this loss may make the bereaved psychologically vulnerable to traumatic life events or stressful life situations and that loss in later life can re-activate this trauma. However, it should be 84 Grief in older people Costello (1999) argues that grief involves older people making adjustments to their lives and that loneliness can be separated out from grief in bereavement. He also recognizes that many older people are not undergoing a singular loss but in fact multiple losses, (also raised by Parkes, 1997), where each loss possibly impinges on the previous loss(es). In some ways this makes bereavement for older people more complicated as they have to cope with social sequestration, ageist myths and a ‘series of life transitions when grief occurs’. In real terms helping an individual to realize that they are normal and accepting this may be the role of therapeutic intervention, counselling and support services. Loneliness may occur as a result of grief, but supporting the person to see both the normality of their situation, and also the wider social context, may develop better connectivity and reduce sequestration of older people. 85 Evidence Reviewed The following table provides an overview of the type of evidence reviewed for this chapter. Type of Evidence Older People Papers Total Systematic or systematic type review Literature or literature type review Cotter et al (2004), Fasey (1990), Fitzpatrick (1998), Fortner and Neimeyer (1999), Frank et al (1997), Harwood (2001), Parkes (1997) 7 Experimental/RCT Oakley et al (2002), Reynolds et al (1999), Segal et al (2001), Tudiver et al (1995) 4 Case Control/ Cohort Bisconti et al (2004), Bennet (1998), Byrne and Raphael (1997), Lalive d’Epinay et al (2003), Li (1995), Ong et al (2004), Schulz et al (2001), Turvey (1999) 8 Observational (no comparison group) Bass and Bowman (1990), Bennett and Bennett (2001), Bond et al (2003), Bowling (1994), Boyatzi et al (2003), Caserta and Lund (2003), Kivela et al (1998), Ryan (1992), Xavier et al (2002) 9 Mixed methods Katz et al (2000), Katz et al (2001), Komaromy (2000) 3 Qualitative Bennett and Hall (2000), Costello (1999), Costello (2001), Costello and Kendrick (2000), Gott et al (2004), Hegge and Fisher (2000), Lyttle (2001), Moss et al (2003) 8 Opinion/text Abeles et al (2004), International Work Group on Death, Dying and Bereavement (2000) 2 Books, Book Chapters, Reports etc Katz and Peace (2003) 1 TOTAL 42 86 Key messages in Older People Boundaries of care are becoming blurred as older people stay at home longer. Research needs to reflect the range of loss for example more work on range of experiences, (throughout the age group) and the effects of multiple losses. There is emphasis on the place for reminiscence in the therapeutic care of elderly people. There is a need for commissioned workers, with a specific remit to explore and reminisce with older people in a similar way to counsellors or other therapists. Most clearly there is a need for enhanced training and broader understanding of grief especially with older people. More clear delineation as to what is meant by the term elderly. Consideration of gender and structure interventions to address the differing needs of the elderly population, particularly issues such as loneliness.