The process of organising and hosting a remembrance service for people with an intellectual disability who have died – Philie Sheehan’s project details one of the significant aspects of bereavement care for families of people with disabilities.
The death of a person with a disability deeply affects families.
Their is sadness and loss of the ‘carer’ role.
Rituals such as ceremonies can help all involved to come to accept the situation.
The birth of a child is the beginning of a process of change for every family. New roles and routines are established, relationships altered, new and varied friendships formed and experiences in the wider community take on a different perspective. The birth of a child with intellectual disability brings all of these changes along with the added dimension of a link and relationship with a service provider.
Most service providers have an interest in advocating for the rights and needs of people with disabilities and in supporting their families throughout the life cycle. As people with disability are often referred at a young age it is inevitable that families, staff and clinicians develop strong relationships over time as the daily routines of the service user, their family, staff and clinicians become inextricably linked.
When a person with disability dies families experience great grief and loss: grief for the person who has died and loss of the regular contact and support from people who have become very significant in their lives. Family members can feel the loss of their caring role, the need to feel needed and the emptiness that is left behind. “Their loss took on totally different dimensions. It was emotional, physical and/or thoroughly social in that a way of life and a sense of self was also lost” (Todd, 2007). Parents can feel isolated and feel their grief is misunderstood as many of their friends and associates may view their loss as a release. The grief experienced by the family may feel disenfranchised, “a bleak and lonely landscape” (Richies and Dawson, 2000) with few opportunities to share their feelings of loss within a caring and understanding environment.
Bereavement Care is an issue that the organisation involved in this change project is aware of and has taken care to address. A comprehensive training package was developed by clinicians within the organisation to assist staff in their support of service users who have experienced bereavement and to recognise issues related to loss and grief. This package also includes a booklet for families to help them explain ‘death’ to their family member with an intellectual disability.
Research with families bereaved of a person with intellectual disability suggests that service providers do not always recognise the needs of parents and families who lose a person with intellectual disability. Reports of dissatisfaction with care and disenfranchised grief point to a need to increase staff awareness of parents and other relatives needs, both pre- and post-loss (Reilly, Hastings Vaughan and Huws, 2008). Research also indicates that bereaved parents and siblings found several sources of post-loss supports to be helpful including continued contact with service providers. (Reilly, Huws, Hastings and Vaughan, 2008).
Ritual can be defined as “an expressive symbolic act that creates a special time and space in which the participants experience themselves as a unique group” (Castle and Phillips, 2003). Rituals in the context of the grief process honour the love and the grief of the mourner (Coryell, 1998). Rituals are often mentioned in literature as having healing or curative properties (Romanoff and Terenzio, 1998).
“Our mere presence as a person who cares will be a significant starting point. It is not what we know but how we are with people that makes the real difference to their lives” (Stanworth, 2004).
- To address an element of bereavement care provision by creating an environment in which the loss of a loved one with intellectual disability can be publicly mourned and socially supported.
- To assess and evaluate the output and early outcomes with a view to embedding ritual within the organisational system of bereavement care.
- To organise a remembrance ceremony, on behalf of the service provider, for families of people with intellectual disability who have died.
“Quality of a service is ultimately determined not only by individuals and clinical practices but also by the systems, organisations and ethos around them” (Shaw and Kalo, 2002).
The project proposal addressed the significance of ritual and social support as aspects of bereavement care and highlighted the potential role for the organisation in supporting these family focused outcomes. Research was undertaken to determine the numbers of deceased in the region in the past ten years. Preliminary costings for hosting a ceremony and the potential positive outcomes for both families and the organisation were documented. These details, along with proposed strategies for the dissemination of information and the provision of progress reports, were submitted to the Regional Management Team for their consideration.
The proposal was sanctioned and approval granted to proceed with planning and organising a remembrance ceremony in keeping with the inter-denominational ethos of the organisation.
Process of change
A change initiative requires the involvement of people and the commitment of a critical mass (Senge, 1990) and careful management of this process is essential. The approach adopted in this instance was informed primarily by Kotter’s Eight Steps for Successful Large-Scale Change (Appendix 1) and aimed to enhance the understanding of those providing services to people with intellectual disability of the importance and significance of ritual in acknowledging the death of a person with disability. Kotter maintains that successful change occurs within a see, feel and change cycle. We visualise a situation and ‘see’ it, ‘seeing’ increases the positive emotions, passion, faith and pride, that facilitate a needed change and this change of heart transforms behaviour. This change in behaviour can then become the ‘new norm’.
The project management was informed by the Projects in Controlled Environments (PRINCE2) process-based approach and involves. initiating, controlling and directing the necessary processes within a specified time to produce an output, in this instance, a remembrance ceremony.
Change management, project planning and learning operated as integrated processes throughout.
“A change agent is someone who brings about, or helps to bring about, successful organizational change. The tasks required of the change agent were to define a clear vision of change based on a broader vision and to deliver key messages to individuals and groups across the wider organization” (Buchanan and Boddy, 1992).
Many factors should be considered when introducing a change project, as illustrated in the following diagram:
‘An analysis of different factors for organisations involved in change’ Nadler, 1983.
Nadler contends that it is useful to think of changes in terms of transitions, with the effective management of change involving the development of an understanding of the current state, having an image of the desired future state, and then moving the organisation towards that desired future state (HSE Change Hub, Accessed: 4th July 2011).
Formal organisational arrangement
The organisation is large, employing over 1400 staff and is dominated primarily by a role culture. It is divided into three regions each headed by a Regional Management
Team (RMT). Specific job descriptions exist within a hierarchical management structure. This is deemed necessary to ensure consistency in the delivery of person-centered services. No one person has the authority to make decisions and front-line staff report to their Head of Unit who in turn reports to his/her service manager. Multi-disciplinary professionals are linked to various units and their advice and recommendations are heeded in the development of service plans. Reporting procedures are adhered to and regular meeting are scheduled to aid communications between disciplines, service managers and frontline staff.
Tasks are allocated according to role, with the role assuming primary importance.
Those in authority make final decisions in the interest of the service user and the efficient functioning of the organisation.
The organisation is divided into regions and it is noted that each region has a unique informal culture and variation in performing its duties while maintaining the organisational ethos. The regions differ in size, the smaller often being able to respond more innovatively to issues and opportunities that may arise. In this particular region the RMT gives due consideration to initiatives and the fostering of positive work relationships and are “open to acknowledging that change agents exist at all levels throughout the organization” (Buchanan and Boddy, 1992).
The majority of individuals working within the organisation have a deeply felt affinity with people with disabilities and many have family members who have a diagnosed disability. This is a particular strength within the organisation and is the factor which made this particular change project an inspiring and positive experience. Smale (1996) suggests “that change often happens because new ideas have resonance with the ideas people already have”
“Project management is having a clear understanding of the purpose of the project as an investment and ensuring that what the project delivers is consistent with achieving the desired return” (Office of Government Commerce, 2005).
In assuming responsibility for this project it was vital to acknowledge the planned change as a potential investment for the organisation and as an initiative that would add to the quality of life of current service users and families of those previously attending the service. It was crucial to ensure that the right team was recruited to promote the project and that it operated in a manner in keeping with the organisational ethos.
Forming a Team
“A team is a small number of people with complementary skills who are committed to a common purpose, performance goals and approach for which they hold themselves mutually accountable” (Katzenbach, 1993).
The project co-ordinator was given sole responsibility for recruiting the project team and did so primarily on the basis of people’s commitment, drive and enthusiasm while also considering their roles within the organisational structure. The team comprised a service user, a front line staff, a service manager and a clinician. The team also included a parent who chose not to attend planning meetings but to be involved through phone calls and visits.
A powerful guiding group is made up of the right people and demonstrates teamwork. “The right people are individuals with the appropriate skills, the leadership capacity, the organisational credibility and the connections to handling a specific kind of organisational change” (Kotter and Cohen, 2002). Complementary skills and appropriate knowledge bases were evident and put to use throughout the change process. The service manager (a member of the RMT) was knowledgeable and proficient in using existing structures to ensure the efficient dissemination of information and also in promoting informal positive discussion with senior management. The front line staff team member was familiar with the families of many of the deceased service users and was aware of undocumented background issues. He was adept at budgeting and a wizard at sourcing deals. He was also ‘on the ground’ in the venue where the preparations were taking place. The service user composed sentiments that friends might express at the ceremony and also compiled a list of songs his friends liked. The project co-ordinator (clinician) monitored the manner in which families were contacted by meeting all key staff in advance and providing information and guidance regarding initial contact with families and was available to deal with any issues arising from these contacts (Appendix 2). The project co-ordinator also ensured that regular information updates were provided in written form to the RMT.
During the development of this iniative many enthusiastic and talented colleagues contributed art-work, created videos, made screens and generated their individual sense of involvement and ownership.
“The ability to build and lead a team effectively is an essential area, as it involves bringing together key stakeholders and cementing effective working relationships. This goes hand-in-hand with the ability to define and delegate responsibilities appropriately” (Buchanan and Boddy, 1992).
Creating a Vision
“A compelling vision can appeal to the heart and motivate anyone” (Kotter and Cohen, 2002).
The first team meeting was spent getting to know each other and exploring our ideas related to hosting a remembrance ceremony. During this meeting we each “painted our picture” ( Kotter and Cohen, 2002) and shared our vision of what we would like the ceremony to achieve. Our visions, expressed and noted at the time, painted a ceremony that was meaningful, personal and celebratory, conducted with sensitivity, honesty and kindness and a hope that people would leave feeling that it was brilliant, useful and of benefit.
We were each of similar mindset, comfortable with these visions and excited about sharing and discussing them with the relevant stakeholders.
Devising a Plan
Projects are constrained by three variables according to the PRINCE2 principles of project management.
The initial scope of the project was a remembrance ceremony for the families of deceased service users but following consultation with relevant stakeholders this was extended to include the friends of service users and staff . The PRINCE2 guidelines refer to the dangers of scope creep but the realisation that these inclusions were in keeping with the organisational ethos ensured that this was appropriate and indeed essential.
Literature regarding support afforded by ritual in bereavement care focuses primarily on rituals around the time of death and therefore it was difficult to decide a retrospective period within which to identify families to be invited. In relation to disability, the lack of research dealing with the deaths of people with intellectual disability can unwittingly imply that their lives are of little value (Todd, 2007) while some research indicated that “the death of a child with intellectual disability must be recognised not only as a devastating loss but also a complex one” (Todd, 2007) and that “communal memorial services when available were a support to some but not all” (Reilly, Huws, Hastings and Vaughan, 2008). These considerations led to further discussion and consultation with outside agencies, namely the Irish Hospice Foundation and Our Lady’s Hospice in Harolds Cross.
As this was a pilot project it was decided to work within a ten year framework, giving the choice of participating to families and analysing the attendance at the end of the process (Appendix 3). For each person deceased two friends were to be identified by staff and invited. Staff working in the service and those now retired would be included.
“Objectives must be realistic, as projects often flounder where goals are overambitious or simply not achievable” (Buchanan and Boddy, 1992).
The Summer Solstice, June 21st, a day of hope and new beginnings, was considered a significant date on which to host a ceremony and afforded a reasonable time frame in which to achieve our defined objectives. Beginning with the end in mind (PRINCE2) assisted in devising a time line, scheduling plans, defining tasks and allocating responsibilities. (Appendix 4and 4A)
There was no specific monetary budget allocated to the project, rather an agreement based on trust that we would make cost-effective decisions and be mindful of the ‘three Es’: economy, efficiency and effectiveness (Audit Commission, 1984). This element of trust provided an incentive to take responsibility for questioning ourselves if we were spending more than we needed to, if we were getting as much as we could reasonably expect from our resources, the impact we were having and if we were spending wisely (Gallop, 2003).
Monetary outputs (Appendix 5) illustrate that expenses were indeed kept to a minimum and it is noted that this may help or hinder the implementation of the project within the wider organization.
A number of specific requirements and issues were considered while identifying an appropriate venue:
Accessibility : for people with disabilities
Size: comfortably accommodate up to 120 people
Safety : fire exits
Availability: flexible for preparation
In consideration of the above it was decided to use one of our existing premises. The desire for a special and memorable occasion in a pleasant environment initially led us to consider hotels and other formal venues, however the decision to use one of our own premises had many advantages most noticibly the extent to which service users could be practically involved in the preparations.
Processes of involvement evolved such as:
- The craft group within the service focused on designing the invitations
- Art classes integrated the naming of sunflowers and mounting them on paper backgrounds.
- Woodwork sessions involved constructing a projection screen
- Collecting photographs involved service users and staff rummaging through boxes of photographs which prompted the spontaneous exchange of stories and reminisences.
The venue was familiar and comfortable to many of the friends attending and ensured all would be relaxed and able to participate fully.
- The choice of building enabled those not attending to have been actively included in the preparations
- The choice of our own premises also generated a positive involvement and sense of ownership from many staff who effectively became members of the team.
The importance of communication and the effective implementation of a communication strategy have been identified as crucial in many models of change and project management “successful leaders, it has been observed, are forever talking to everyone” (Handy, 2009).
Kotter and Cohen advocate that one needs to “communicate change visions and strategies effectively so as to create both understanding and a gut-level buy-in” (Kotter and Cohen, 2002).
Dissemination of Information
“The people aspect of project management often receives much less attention, but can make the critical difference in determining the success of a project” (HSE, Change Hub, Accessed: Jan. 2011).
This, without doubt, proved to be the most interesting, rewarding and challenging aspect of the project.
The provision of services in many established voluntary organisations is people-led, often involving staff that have been part of an organization for many years and who possess a huge personal interest in and commitment to people with disabilities. The PRINCE2 guidelines, with reference to the importance of identifying project stakeholders, define them as “individuals and organisations that are actively involved in the project, or whose interest may be positively or negatively affected as a result of project execution or project completion”. The planning and implemention of this project demonstrated frontline staff as the real stakeholders and it was their interest in the output and their considerations on the possible effects on service users that ensured suggestions and advice at every turn and led to positive outcomes.
“Clarity in specifying goals and defining what is to be achieved is also an important part of the change agent’s skill set. This calls for a firm understanding and overview of the entire change initiative” (Buchanan and Boddy, 1992).
The initial stages of information dissemination involved attending the monthly head of unit and service manager Cluster Meetings (day and residential staff) with the aim of transmitting accurate information to as many staff as possible within a limited time. Scheduling attendance at both cluster meetings in the same month aimed to maximise the liklihood of everyone receiving and understanding the same information and to minimise the spread of misinformation. Meeting the staff face-to-face also afforded an opportunity to analyse their attitudes and their need for involvement (PRINCE2).
An information sheet explaining the background to the project, outlining suggestions and guidance on how to contact the families known to them and involving front line staff from the outset ensured all were empowered to become active participants in the project.
Presentation of Plan and Rationale
“Change agents need a variety of interpersonal skills, including listening, collecting appropriate information, identifying the concerns of others and managing meetings” (HSE Change Hub, Accessed Jan. 2011).
The cluster meetings provided an initial forum in which the stakeholders could discuss their concerns and offer suggestions on how the ceremony could be made most meaningful. This also gave the project coordinator an opportunity to identify resistances, described as potentially logical, psychological or sociological (Newstrom and Davies, 2002).
The proposed plan was presented to staff within a framework of bereavement care. The relationships families develop with care providers and their possible feelings of isolation following the cessation of this contact were discussed and explored. Individual staff members identified with this rationale and shared past feelings of ineptitude in such situations. We discussed the significance and importance of ritual with reference to the symbolic element, the facilitating of emotional expression and empowerment (Castle and Phillips, 2003). Some staff had concerns about causing distress to those most recently bereaved (possible psychological resistance) and these concerns were addressed with reference to research outlining the benefits of social support following bereavement (Parkes,1993) and the notion of continuing bonds (Klass et al, 1996). At this stage staff highlighted the needs of the friends who were left behind and the advantages to them of taking part in a communal ceremony illustrating the premise that “early participation will uncover, at the very outset, the objections that are bound to emerge as resistance later” (Young, 2009).
Ongoing contact by email and face-to-face meetings with their head of unit continued throughout the planning process. A draft timetable and structure for the ceremony was forwarded a month in advance for consideration and comments.
“A well developed communication strategy can facilitate change and act as a catalyst for change by providing channels for feedback. It is therefore important that those responsible for internal communication work closely with senior management to agree the culture and communication style it wants to adopt” (HSE Change Hub, Accessed: Jan. 2011).
Communication with the RMT was maintained through formal channels by written updates for their monthly meetings and informal conversations outlining progress. The enthusism and goodwill demonstrated by frontline staff and the involvement of service users was highlighted. The Regional Director reported progress with his counterparts in other regions and the Chief Executive Officer of the organisation.
The ceremony aimed to facilitate a supportive social environment for people affected by the death of a service user and we were aware that those attending had differing relationships with the deceased and the time since bereavement varied greatly.
There are several aspects of grief rituals that most authors agree are important for the ritual to be effective (Castle and Phillips, 2003). These include symbolic elements, the presence of emotions, presence of spirituality and chosen others to participate in the ritual. The ceremony plan (Appendix 6) took these aspects into account, symbolically by the use of photographs that “may help relive cherished moments from which a larger perspective of the persons life and its significance can be constructed” (Richies and Dawson, 1998) and chosen music as “helpful for persons who find it difficult to put their feelings into words” (Castle and Phillips, 2003). As rituals may help people be less analytical and more in touch with their feelings (Feinstein and Mayo, 1990) the recruitment of an experienced speaker, familiar with bereavement issues and comfortable in situations involving high emotion assisted in allowing the participants channel feelings within a safe environment. Reeves and Boersma (1990) found that other people included in the grief ritual “can offer support through acknowledgement and acceptance” while Gowensmith (2000) cautions that it is critical to carefully choose the others who will be participating. The quality of this ceremony in relation to choice of participants and the importance of reminiscing was described by one participant in her written comment “thank you for a wonderful remembrance ceremony. It is very important to me that my sister is not forgotten”.
The primary concern related to initiating contact with families some of whom had experienced their bereavement many years earlier and some in recent months. Invitations, scheduled to be sent in early May, were preceded by individual family contact by a known staff member who gave background information prior to receipt of the invitation. The majority of families reacted positively but two were definite they would not be attending. This was due to unresolved issues with the organisation.
The parent, visited and invited to particpate as a team member, was keen to be involved but found it difficult to participate in official meetings. As the contact had been established it was decided to meet with her request to remain involved through phone calls and visits.
The recruitment of an experienced speaker acknowledged our lack of experience in managing an unknown situation and ensured as much as possible that a safe environment was created. Clinicians also attended as support for those who may be unduly upset.
Practical risks related to ensuring that at least one photograph of each service user was available to be screened and that families were aware that photographs would be displayed. The equipment, audio system and computer/projector, was tested a week in advance and a standby projector available.
The ceremony took place on 21st June and was very well attended. The ambiance was warm and welcoming. Family members were welcomed in the foyer which featured displays on current activities within the centre. Candles, named for each deceased person, were given on arrival. Families were seated to the front to ensure ease of access when lighting candles.
The room had been decoratively prepared and sunflowers, named for deceased individuals, adorned the walls. The theme of remembering was illustrated with posters citing “To live in hearts we leave behind is not to die” (Campbell, 1825).
The ceremony began with a welcome followed by a short introduction and background as to why bringing people together was felt to be important. The invited speaker’s input, discussed and prepared in advance, was delivered in two stages. It initially focused on the feelings that can surface at times, the importance of acknowledging these feelings and understanding why and how they happen. The speaker focused on the positives, the social support of remembering together and the comfort that can be gained.
Individuals were then remembered by staff and service users and families were invited to light their candle. This was an emotional time with many family members and staff visibly affected. Music played softly in the background and photographs were screened. Candles were placed on a mirrored top table which created a mellow, calming and comforting scene.
The invited speaker then spoke about emotions and the importance of taking care of oneself. He invited participants to share a minute’s silence which resulted in a peaceful, reflective experience. The ceremony was then closed and the people involved in the planning and organising were individually thanked. It was a beautiful and memorable experience, reflected in some of the written comments on the night:
Wonderful idea! Great evening
Thanks for a lovely night of remembering
A very worthwhile experience and helpful
Everything was great!!
A lovely idea. Very well presented
Very touching. I worked with most of those people for thirty years
Well done everyone. Sensitive and creative
A beautiful ceremony. Well Done
Absolutely wonderful. Well Done
Very touching, great work put into night by all
Excellent service. Well done and sensitively handled
Great idea. We thoroughly enjoyed it
Thank you all very much for a lovely memorial to all who have gone from us Lovely photos of my sister
Excellent. Lovely idea. Emotional healing Thanks
A great evening, very sensitive and moving. Thank You
Families bereaved during the ten years were represented although the majority who attended had experienced their bereavement in the previous five years with the highest being those bereaved in the past three years. Staff and clinicians throughout the organisation also attended .
Service user attendance was lower than expected and while this may be explained by staff not being available to provide transport and support it may also reflect a breakdown in an element of the communication process.
Feedback gathered on the night in written comments was supplemented by further communication through visits and phone calls. Responses revealed that there had been some misunderstanding regarding invitations to service users. A questionnaire had been considered but was deemed inappropriate for the occasion.
This ceremony received positive and enthusistic support from all stakeholders, management, service managers, frontline staff, clinicians, service users and families. Factors crucial to the project’s success included:
- time limited with an achievable and ‘real’ outcome
- met an agreed need
- relatively inexpensive and appealed to ‘pragmatic’ individuals
- required varied inputs and facilitated inclusiveness.
Issues raised and suggestions for the future included:
- The need for adequate emotional support for service users prior to and following any future ceremony. It was suggested that group preparation may be an appropriate means of providing this support.
- Invitations to a wider range of retired staff.
- The need to remember deceased staff – perhaps one candle to remember all.
- Families not necessarily be seated to the front.
- A more inclusive communication strategy.
- The rostering of extra staff and the provision of transport.
Those who attended reported the ceremony as a valuable experience and the majority believed a ceremony every two years would be appropriate.
The team reviewed the event and believed it to have been very successful while suggestions for future ceremonies were carefully considered. We acknowledged we had worked well together, had complementary styles of communication and had been able to share our ideas and opinions. We felt that we had been committed to the task and willing and able to support each other. We had all enjoyed the experience.
A report detailing the process of development, the contact details for families, a template for the ceremony and recommendations for the future including additional resources required and suggestions for a more comprehensive communication strategy was submitted to the RMT. We agreed with feedback suggesting that a similar ceremony be hosted every two years and this was recommended to the RMT.
“Short term wins by empowered people working on the vision are critical and provide credibility, resources and momentum to the overall” (Kotter and Cohen, 2002).
The project output equates to the sixth step ‘to create short-term wins’ of the Eight Step model of successful change proposed by Kotter and Cohen (2002). The remaining two steps, “don’t let up” and “make change stick” is a work in progress.
The project was undertaken in one of three regions within a large organization. It was supported by the RMT and considered by many to have been extremely positive. However, this was an initiative that was permitted to proceed on the basis of trust, with an unspecified budget and a reliance on the goodwill and involvement of many committed staff that were known to each other. This support facilitated the ‘see’, ‘feel’ and ‘change’ cycle with the resultant positive emotion and a recommendation that the event should be repeated on a regular basis.
Kotter’s seventh step ‘don’t let up’ advocates that situations be structured so people can gain the power to undertake the most intractable problems. Power can be in the form of time, resources and access. In this regard it has been proposed that the social work department will lead the development of future ceremonies as an element of bereavement care and engage a team comprised of front line staff and a service manager.
Change can be kept in place by “the creation of a supportive and sufficiently strong organisational culture” (Kotter and Cohen, 2002). On a positive note the organisation is progressive with an ethos of person and family centered services and should be acknowledged for the strengths already present and supported in orientating new staff to ‘the new norm’.
An article on bereavement care and the significance of ritual in providing support accompanied by photographs taken during the ceremony has been included in the upcoming newsletter and will be distributed to families throughout the organization. This will raise awareness and encourage debate.
“Example is not the main thing influencing others. It is the only thing” (Schweitzer, 1875 – 1965).
This change project occurred within the smallest of three regions in a large organisation. The geographical size and the management style within the region facilitated the change process by its recognition that change agents exist at all levels and in its belief that the output would ensure that the organization employs continuous improvement in an attempt to achieve best practice (Joyce, 2010). The process provided opportunities for many people to utilise their skills and demonstrate their commitment in working with people with intellectual disability. The depth and significance of these relationships were evident throughout the process.
An enhanced monitoring of communication and transport is recommended to facilitate the attendance of a greater number of service users. The positive experiences of those who participated augers well for future ceremonies and will influence greater participation by staff and service users.
“We need to be reminded to feel proud of the cause we serve. Organisations often starve themselves of ceremony and ritual. Perhaps they are missing something, something which needs to be created in an appropriate form” (Handy, 2009).