The Grief of Bereavement in the Intellectually Disabled - Dissertation Example

? Grief of bereavement in the intellectually disabled Grief of bereavement in the intellectually disabled Grief of bereavement in the intellectually disabled Introduction The plight of people with disabilities had always touched my heart whether physically or intellectually disabled. They did not seem to enjoy the rights that others did. Grief was just one situation which complicated the life of the disabled, especially the intellectually disabled. In grief, pathological or complicated grief was uppermost in my mind after observing the attitude towards a relative of mine, an intellectually disabled, who was ill-treated when her mother passed away. This girl of 19 years and very dependent on her mother was not allowed to come anywhere near her mother’s body before she was taken away. She was being continually picked upon and that left her irritated and lost. The bereavement could not be handled by this girl and the attitude of her aunt made her worse. The community as a whole did not know how to handle grief associated with bereavement. The psychological responses such as yearning, anxiety, depression, distrust of others and complicated grief were expected of the intellectually disabled. Carers and staff were not prepared to recognise or to provide effective support at the time of loss and bereavement. Their ignorance of how to handle the situation could be the main culprit. Searching through the literature, I was surprised to find that little empirical research had been done to specifically look at the normal or complicated grief response in people with learning disabilities. On a personal level the subject is of great interest to me and it is intended that this research will increase my knowledge in theory and practice as well as enhancing the importance of research to my continuing professional development. History My search took me to the university Library. Electronic search engines and databases were looked through. PSYC INFO, CINAHL, PUBMED and the COCHRANE electronic databases helped me gather some material pertaining to the subject. The keywords used were bereavement, psychological reactions, loss, complicated grief, grief and learning disabilities. The Learning Resource Centre (LRC) library, Department of Health and Rowntree Foundation website helped me to retrieve grey literature. Boolean operators were used to narrow the results. Combined randomised controlled trials of bereaved adults with learning disabilities that compared community based interventions were included in the review. Life events with its psychological problems that were emotional, psychiatric and behavioural responses to bereavement were also included. Recognition and concept of death by people with learning disabilities and their families and carers, as well as inclusion of assessment tools of complicated grief were selected. The exploration of support and interventions were also collected. A number of recent articles had considered the implications of grief and bereavement for people with learning disabilities. This had influenced me to concentrate on the parameters of the years between 2002 and 2010. Because of limited empirical studies I have included some of the articles with case studies illustrations. With eleven journal articles, I was ready to start on my hunt for ways of managing complicated grief in intellectually disabled persons. Could I be signalling off a process which has the outcome of the improved welfare and quality of life of the intellectually disabled at heart where bereavement grief is concerned? Critique of two articles on data collection and analysis Dodd, P., Guerin, S., McEvoy, J., Buckley, S., Tyrrell, J. & Hillery, J. (2008). A study of complicated grief symptoms in people with intellectual disabilities. Journal of Intellectual Disability Research, 52 (5), 415-425. The data were contained in the two assessment tools used for this study: Complicated Grief Questionnaire for People with Intellectual Disabilities (CGQ- ID) and Bereavement History Questionnaire (Adapted). The tools had been described in detail. The validity, internal consistency and inter-rater reliability had been assessed as good. The data were from two groups of people, one bereaved in the last two years and the other was a demographically matched comparison group which had no history of bereavement. The data was carer-based so the intellectually disabled who had a low adaptive or cognitive problem or poor social interaction were excluded using the Index of Social Competence Data collection was done in a satisfactory manner. The CGQ-ID which was to convey the sensitive symptoms of complicated grief of the patients were filled in by the carers. The carers had filled in the measures independently without consulting the investigator or referring to the notes or files or talking to the clients. Investigator bias was excluded. The provided data could not have been totally correct as the chances of carer bias were inevitable. The answers here were more of observations and the interpretations of the carers rather than those actual experiences that the interactive interviewing of the clients could reveal. Interactive interviewing by the investigator could have elicited maximum relevant results by adding to the information gathered by the carers. Though observations were also one manner of data collection, it was not sufficient here. This manner of assessment had to be changed for future research. Communication with the clients could have produced the thoughts of the participants and results would have been different. The Index of Social Competence considered them as capable and answers could be expected of them. Here the method of written descriptions also could have worked better as all the participants had already passed through their bereavement period and those who could write could be sorted out. Having given their consent earlier, they would have cooperated. The interactive interviewing could have elicited more evidence of grief events. The other tool Bereavement History Questionnaire and the Index of Social Competence were completed by the investigator through communication with the carers. The samples of these tools had not been included in the paper and the manner of questions could not be understood. Data analysis had been described fairly clearly. Answers were obtained to the questions initially asked. Also sufficient tables had been added to portray the results. The tables were detailed and provided sufficient matter. Various comparisons were made which contributed to the answers. The bereaved group had a higher score by all measures. The questions which evoked the research were answered. Complicated grief symptoms were found more in the bereavement group. More than 1/3 of the bereavement group had more than 10 clinical symptoms. Dowling, S., Hubert, J., White, S. & Hollins, S. Bereaved adults with intellectual disabilities: a combined randomized controlled trial and qualitative study of two community-based interventions. Journal of Intellectual Disability Research. 50 (4), (2006) 277-287. This being a mixed study, both quantitative and qualitative measures were available. The quantitative measures were assessed by the following tools: the Aberrant Behavior Checklist – Community (ABC-C) and the Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD) (Ashok et al, 2002 and the ABC-C (Aman et al, 1995). The validity of both had been confirmed before use. Changes of behavior were assessed before the intervention, after it and during follow-ups. The staff and family members provided the information about outcomes of mental health and behavior. The analysis was performed correctly and comparison was possible between the pre and post intervention scores of the two groups with interventions of counseling and integrated intervention. The Wilcoxon Signed Rank Test was used for analysis of the ABC-C data and paired chi tests for the HONOS-LD. The extent of change between the pre and post scores was adequately determined by using the independent sample t test for both tools. The analysis was done using the SPSS v10 Windows. The qualitative data were collected using semi-structured interviews conducted separately with the participants, their carers and families before and after the intervention. The data obtained were stored in a database for future comparison. The grounded theory was used to analyze the transcriptions of the interviews with the assistance of the field notes. Analysis was appropriate for both the qualitative and quantitative sides of the mixed study. Critique of the other studies The approaches by the National service and organizations to bereavement were studied in a group of staff in Ireland and compared to a group in the UK using questionnaires (Dodd et al, 237). Positive attitudes were mostly seen. Ireland certainly was looking after the bereaved but this could be a culture-specific phenomenon as other researchers had reported a deficiency in the attitudes (Oswin, 1991, Harper and Wadsworth, 1993, Raji et al, 2003 in Dodd et al,). Future research needed to focus on staff which was dispersed over a larger geographical area and from many varying institutions (Dodd et al, 242). Guidance had to be provided for interpreting the questionnaires to raise the validity and reliability. The staff needed to be supported for grief counseling and efforts to limit the counseling also had to be thought of. Dowling et al’s study of mixed design was to investigate for an appropriate bereavement support that would be useful, effective and practical for the grieving (20). External bereavement support and integrated support were investigated through interactive interviewing of carers and participants. The situation before the intervention and the alterations in emotional status and outlook after it were both studied. Carers and participants were involved. The authors opted for external bereavement support. They found that integrated intervention had a difficulty of delivery. Bereavement support and counseling must be routinely available from the same group of counselors. Extra support must be provided as intellectual disability made the clients more susceptible to complicated grief and resistant to the usual support (Dowling et al, 21). Daily support by the carers may be necessary. Jordan in a summary of several meta-analyses and literature reviews expressed the opinion that future researches needed to improve in quality (778). Internal validity must be good so that conclusions could be made with confidence. Outcome measures of bereavement intervention studies needed to be selected so that not only symptoms but other features that indicated pathognomonic features observed only in bereavement were assessed. These included “yearning for the deceased, feelings of guilt and remorse, shattering of the mourner’s assumptive world, and so on, that are unremitting, long term in duration, and disruptive of functioning” (Jordan, 778). In analysis, moderator variables were to be considered for determining the effectiveness of the intervention. Bereavement intervention research must preferably be of a mixed design. Qualitative methods helped to investigate into these issues specific to bereavement and improve the interventions. Studies preferably focussed on high-risk mourners who have what is known as complicated grief (Jordan, 779). He recommended the new Inventory of Complicated Grief (Prigerson & Jacobs, 2001) and the Grief Evaluation Measure (Jordan, Baker, Rosenthal, Matteis, &Ware, 2003). A solid theoretical foundation and how their interventions were implemented were to be incorporated in all researches. He recommended future researchers to read the work of Murphy et al (1998) and Sandler et al (in press). The research needed to focus on efficacy and was to be within the limits of bereavement care programs. Clinical settings could provide more effective conclusions (Jordan, 779). The active component was psychotherapy and the intervention was to be based on this. Grief counseling alone could not produce the beneficial effect expected. Compassionate empathetic people were to be absorbed into the carer industry. Dodd and Geurin (442) did a synthesis of recent researches to achieve a better understanding of reactions to grief by intellectually disabled persons. The differences of grief reactions and death understanding, “pathological or complicated grief” and demands of carers and staff were addressed. The recognition of pathological or prolonged grief would have an impact on research and the interventions possible. Researches had mostly been small-scale ones. Future research needed to be rigorous and on empirical lines. Prolonged grief had been recognized as a different clinical condition which needed specific intervention therapy (Dodd and Geurin, 445). Pre-loss communication and depression due to bereavement were related. Metzger and Gray (301) investigated this relationship and the relationship to complicated grief. The post-loss outcomes were related to the pre-loss communication. The manner of accepting the loss could influence bereavement outcomes. Questionnaires were distributed after instructions. The first provided information on how the bereaved client communicated with the dead before death. The second told us how the client would have liked to communicate. This study had limitations. All the participants were bereaved. Comparison and generalization were not possible to discuss less bonded relationships. Online bereavement groups were selected as participants. The data collection was online. The predominantly female population was another factor against generalization. The assessment being retrospective, the real feelings could not have been expressed due to memory loss. The length of the measures was a discouragement for the participants, many of whom dropped out. Bereavement counseling needed to be given to the families of the ill (Metzger and Gray, 322). Future research needed to be studying many variables together (Metzger and Gray, 323). Samples could be diverse and different relationships with different level of closeness could be examined. The accurate memory of the pre-loss communication was important for the research findings. A non-online study also needed to be done on the same lines. A combination of qualitative and quantitative methods could produce a better picture of the relationship. Planning for the loss of close ones was a necessity (Metzger and Gray, 323). A comprehensive literature review of 77 articles examined the current opinion on pathological grief by eliciting the information on emotional, behavioral and psychiatric responses to bereavement (Dodd et al, 537). These researchers advised the need to describe symptoms of pathological grief more clearly (Dodd et al, 542). Equipping the families and carers was a significant necessity. Bereavement services were to be developed so as to understand the high-risk groups better (Dodd et al, 542). McBrien reviewed a few papers to investigate the diagnostic criteria, depression symptoms and the rating scale deficits. The validity of the concepts for depression was doubtful still. Future research needed to have “large-scale, collaborative and prospective studies” (McBrien, 1). The criteria for diagnosis of severe intellectual disability had not been developed yet while mild and moderate ID were diagnosed by criteria (McBrien, 8). This could also help clinicians. Gilrane-McGarry and Taggart (129) investigated the types of support obtained by the intellectually disabled people from frontline staff at and around the time of bereavement. Primary and secondary interventions were identified by a qualitative methodology and retrospective design. Semi-structured flexible interactive interviewing was the procedure adopted (Gilrane-McGarry and Taggart, 132). Data analysis was by Burnard’s framework. A significant point noted in this study was the need to support the supporters (142). The sample was small and from one geographical area, reducing the ability to generalize. As this was a retrospective study, the chances of memory being affected were present. The researcher could have been mistaken for being the counselor by the ID. In-depth interviews if repeated could make better assessments about the bereavement grief. MacHale and her colleagues investigated the perceptions of staff about the users requirements (574). The ID people were expected to have different concepts of death. The level of staff confidence to provide bereavement support was another factor which was studied. A positive picture was obtained on the support provided. The level of understanding of the ID was misunderstood by many staff. Behavioral changes were the features recognized by the staff. When symptoms were internalized as sadness and depression, staff was ignorant of the user’s need for support. Occasionally behavior of the users could be mistaken for being a part of the ID rather than being a demonstration of complicated grief. Staff appraisal of service users being very essential in research, the issue of training them for bereavement support arose (Machale et al, 580). This advice could be useful for future research. Psychodynamic theories had been considered in Berzoff’s paper (273). Grief consisted of psychological and social phenomena which were complex. It was found capable of destroying the mind of a mourner. The significance of bereavement support had been highlighted in this paper. References: Berzoff, Joan 'Psychodynamic theories in grief and bereavement', Smith College Studies in Social Work, 73: 3, (2003) 273 — 298 Routledge, UK. DOI: 10.1080/00377310309517686 URL: http://dx.doi.org/10.1080/00377310309517686 Dodd, P., McEvoy,P., Guerin, P., McGovern, E., Smith, P.and Hillery,J. Attitudes to Bereavement and Intellectual Disabilities in an Irish Context. Journal of Applied Research in Intellectual Disabilities (2005) 18: 237–243 Dodd, Philip C. and Guerin, Suzanne. Grief and bereavement in people with intellectual disabilities Current Opinion in Psychiatry 2009, 22:442–446 Wolters Kluwer Health | Lippincott Williams & Wilkins DOI:10.1097/YCO.0b013e32832e2a08 Dodd, P., Guerin, S., McEvoy, J., Buckley, S., Tyrrell, J. & Hillery, J. (2008). A study of complicated grief symptoms in people with intellectual disabilities. Journal of Intellectual Disability Research, 52 (5), 415-425 Dodd, P. Dowling, S. and Hollins, S. A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research. Vol 49 (7) (2005): 537-543 Dowling, Sandra, Hubert, Jane and Hollins, Sheila 'Bereavement interventions for people with learning disabilities', Bereavement Care, 22: 2 (2003) 19 — 21 DOI: 10.1080/02682620308657569 URL: http://dx.doi.org/10.1080/02682620308657569 Gilrane-McGarry, U. and Taggart, L. An exploration of the support received by people with intellectual disabilities who have been bereaved. Journal of Research in Nursing. Vol 12(2) 129–144 DOI: 10.1177/1744987106075611 Jordan, John R. and Neimeyer, Robert A. 'DOES GRIEF COUNSELING WORK?', Death Studies, 27: 9, (2003) 765 — 786 DOI: 10.1080/713842360 URL: http://dx.doi.org/10.1080/713842360 McBrien, J.A. Assessment and diagnosis of depression in people with intellectual disability Journal of Intellectual Disability Research Vol. 47(1). January 2003.:1-3 Machale, R., McEvoy, J. and Tierney, E. Caregiver Perceptions of the Understanding of Death and Need for Bereavement Support in Adults with Intellectual Disabilities Journal of Applied Research in Intellectual Disabilities 2009, 22, 574–581 Published for the British Institute of Learning Disabilities Metzger, Patricia L. and Gray, Matt J. 'End-of-Life Communication and Adjustment: Pre-Loss Communication as a Predictor of Bereavement-Related Outcomes', Death Studies, 32: 4, (2008) 301 — 325 Routledge Taylor and Francis Group. DOI: 10.1080/07481180801928923 URL: http://dx.doi.org/10.1080/07481180801928923 Read More