Untitled

Sandra Wood – copyright
Respecting, navigating and negotiating the delicate interplay between
the aspirations of carers and care-recipients

Introduction
• Thank you to our Hong Kong hosts, thank you for your welcome. I’m here to talk about respite. I’m speaking particularly about the respite program I work in, Southern Respite Service, in Victoria, Australia, and I want to qualify two things before I go into the specifics of my presentation. • Firstly the context for respite programs being set up in the community – the shift from hospitals as the dominant psychiatric services, to home and community based services. Deinstitutionalisation and over the last three decades this has meant that, “…much of the emotional burden, financial costs and day to day responsibilities of care have been transferred to the families of the mentally ill.”(Lofgren, H, 1998, 6). • Secondly -When I refer to our service in this presentation, I’m conveying descriptions about who we are, in a cultural context, meaning, values that are reflected as part of our mental health sector and our broader community. When I say broader community, I’d like to acknowledge that there has been a push toward service provision encompassing culturally and linguistically diverse clients but this is within the predominant social and cultural context of the wider mainstream anglo-celtic/saxon models for service delivery.

As a respite service, Southern Respite Service, has two components to its primary task.
The first is to provide respite, meaning ‘time-out’, for the carer and care recipient
relationship so as to benefit both, and the second is to work with the carer recipient
within the framework of psychosocial rehabilitation principles. When I say ‘carer’, we
assess that this is someone who would benefit from the service intervention because
they support a person who is experiencing a mental health issue in a significant way,
emotionally, psychologically, practically. A carer is an unpaid person involved in the
person’s life and does not have to live with the person they support in order to be
eligible for our service. The respite provision is designed to be flexible thereby
considering the needs of the carer and care recipient. As part of service provision we
have an assessment meeting that takes place in the clients home, with the carer also
present, and usually also the main clinical or other professional support person the
recipient has involved as part of their care. My presentation here today explores this
assessment process and my aim here also is to share some of my experience in the
sensitivity required as a mental health practitioner in holding in mind a number of
perspectives and frames of reference that each of these parties bring to this meeting,
with a more specific exploration of the carer’s position.
Type of service provision
The service employs an approximate of sixteen respite worker staff, they have varied
skills, qualifications and experience. These range from students undertaking their
social work or psychology degrees to workers who have qualifications in recreation
and community development and there are also workers who do not have formal
C:\kong\finsih convertion\word\V.doc Page 1 of 12 qualifications but have much accrued experience in the community health and welfare sector. Each financial year the program delivers service to an approximate of four hundred clients, clients inclusive of carers, through the various service options I’ll describe. Before outlining the various options the program facilitates, it is important to qualify that the service options offered are all planned options, these have timelines and dates set out for clients in advance. Respite is not provided in an emergency context and the program doesn’t provide respite in the form of residential respite. Southern Respite Service is a respite service that provides a number of respite options that have mainly a focus on going out with clients into the community and undertaking an activity with them. These respite options include, respite holidays to various destinations in our state of Victoria, they are usually of four days duration, most of these are either in a group context (ten participants on each holiday) or respite holidays can also be provided for an individual client. Other respite options involve the formation of small group respite activities, whereby two or three people who may have similar interests and who would like to increase their social connections with other’s may like to participate in small group activities that are organised over a series of sessions. Respite options can also involve day activities for a group of clients with a particular activity focus such as going fishing for the day. We have also provided as a service option, in home respite, in circumstances where a carer may wish to go away and the person they support needs assistance for the time the carer is not at home with them. Individual respite packages are the other respite option we offer. They form a substantial part of our service delivery. These individual packages involve scheduling a number of respite sessions that are usually of a two or three hour duration and more commonly, either occur weekly or fortnightly. When we set up an individual package we do an assessment and we do approximately eighty of these in a given financial year. Assessments are done by either one of our two respite co-ordinators on their own or with myself as program manager. At the assessment meeting, we ask clients what they would like to do in the respite sessions, encouraging clients to take ownership of this and also expressing to them that the respite will give them the opportunity to do the things that they may enjoy and find meaningful with the support of the respite worker so as to increase their confidence and pursue these activities and interests beyond the time of the respite package. The respite sessions are also about the opportunity for familiarisation of their local community and beyond and to support people to broaden their everyday routines by engaging them in social and recreational themes. We further engage clients in the rehabilitation process, by writing down what client’s would like to do as part of their respite and incorporate this as their goals on their respite plan. The underpinning value that the service holds for the client is that we provide a client with a context whereby support and assistance is given to clients’ to enhance, highlight and give weight to their sense of ability, what they are able to physically and mentally do in the context of their participation in social, practical and physical activities. It may be obvious but none the less important to stress here, that a substantial element to respite provision that is both implicit and explicit, is the valuable impact that the service can assist with, in changing, improving or enhancing peoples’ sense of quality of life. This quality of life factor is, and should be, defined individually and fit with an individual’s needs. Because this is explored at the assessment stage it sets the tone of C:\kong\finsih convertion\word\V.doc Page 2 of 12 the relationship between we, the service provider, and the clients of our service, the
carer and the person they support and give care to.
The assessment process
Following this description of our respite program and service options, I now am
moving on to exploring more closely the issues of what happens at an assessment and
also the issues that are reflected and are present particularly for carers in this process.
An assessment time is usually set up with the referring person who has made the
referral on a client’s behalf, to our program. The referring person is often a clinical
support person, usually a case manager, at times a key or support worker or
alternately a G.P or at times a psychiatrist. Referrals are also at times made by carer’s
or clients themselves. We do request that each of these people are present at the
assessment. In the time I have worked at the program it has been very unusual for a
G.P or psychiatrist to be present at an assessment, so we would still do the assessment
without them but would follow up with them in phone conversations both before and
after the assessment.
Assessments are conducted at the client’s home, and as a mental health practitioner
one needs to hold in mind very respectfully, that we, as strangers, are entering a
person’s private physical space. A space that can reflect much about them and the
dynamic of the relationships played out in this same space.
As the service provider our aims with the assessment are to introduce and describe the
service we provide, to discuss the client’s needs, to gain an understanding of the
client’s own understanding of their mental health and to assess the suitability of our
service with their needs. Implicit in this also, is to gain an understanding of the
person’s beliefs, attitudes, their own awareness and how this contributes to attaining
their sense of meaning to quality of life benchmarks. What we also aim to derive from
this dialogue is an understanding of the carer’s sense of their caring role.
How does it impact on them, how do they perceive this role, how do they self-care or
not, how do they carry their sense of responsibility? These questions, that we hold in
mind, as practitioners when at assessments, are with the implicit prioritizing of the
carer’s needs also. But these questions often need to be posed with subtlety in the
assessment process with carers.
In my experience of these assessments for the respite program over the last five years
each assessment that I have been involved in and facilitated has shaped my awareness
and mindfulness in relation to a carer’s self concept. I mean self concept in relation to
how they perceive their caring role, how they understand the impact of the mental
illness on themselves as well as the care recipient and the impact on their own
fundamental beliefs and values about the relationship they have with the person they
care for.
Carer’s notions of self care and view of their caring role
A closer look at this notion of a carer’s sense of need for self care and the view they
hold of their caring role. The carer’s own sense of need for self care is an important
consideration at assessments. This incorporates how carer’s think about how they use
time for themselves, how they take psychological, emotional, practical and social time
for themselves, applying their focus to self nourishing ways of being so as to make
space for their own mental health and well being. Each individual carer is on a very
unique point of the self-care continuum. This can range from a carer not being able to
acknowledge their own needs in relation to the person they care for so that their focus
is predominantly on the recipient’s needs. At other times carer’s sit uncomfortably in
C:\kong\finsih convertion\word\V.doc Page 3 of 12 being named a carer because the word carer may conjure negative connotations about
the person they care for and their dependency on the relationship and can be
experienced as disempowering for the care recipient. Alternately, the carer and care
recipient relationship can be tensely strained, by the level of needs, and there is much
ambivalence and alienation that carer’s may experience in the carer role.
Here I have just expressed briefly three possible perspectives that carers are sitting
with at the time we meet them at the assessment process. The complexities of these
perspectives are often underpinned by issues of grief about lost quality of relationship
with the care recipient. Anger, guilt and frustration about how the mental illness has
affected the person they care for, the how’s and why’s of the impact of mental illness
on the person’s life and the subsequent impact on the carer’s own life. Again, here in
our role at the assessment we as mental health practitioners, need to be aware and
sensitive about these themes that may be present for the carer, and how we approach
the discussion about their needs and their role, while also being equally mindful and
respectful of the needs and perspective of the person they care for.
What is also often held by the carer as part of their caring role is the highly sensitive
perspective of notions of social stigma and the carer’s often acute sense of awareness
of a need to protect the care recipient with regard to potential social prejudices,
mistreatment or misunderstanding. Paradoxically at times, it can also be a carer’s lack
of understanding of symptomatology and impact of the mental illness on the person
they care for, that can lead to misunderstanding and strain in the relationship
dynamics. Eg. Judging negative symptoms, lack of motivation as lazy.
Carer’s understanding of PSR (rehab, independence, therapeutic boundaries)–
how does this fit with notions of familial values/culture?
The respite intervention is also about psychosocial rehabilitation. PSR is discussed at
assessment by explaining that not only is the respite about giving the relationship a
break or ‘time out’. It is also to assist the care recipient to engage, with the support of
a respite worker in a varied number of social and recreational activities so that there
can be some therapeutic and rehab benefits for them. The purpose of this is explored
further and we are often implicit in the way it is conveyed. We are attempting to
support the person to engage in activity which increases their sense of confidence and
self esteem(as I mentioned earlier) and hopefully reduces their anxieties about
actively pursuing and engaging in social contact with the worker and within physical
contexts and parameters that are beyond their usual, familiar environment. When a
person is given a psychiatric diagnosis they can experience a loss of confidence,
change in self-concept and low self-esteem and this often leads to greater isolation.
This isolation can invoke great difficulty with what we perceive as simple tasks, for
example, going for a short walk or purchasing essential groceries at the local
supermarket. Because of this we may suggest to clients that the respite can ‘help to
change their normal routines’, which for a substantial number of our clients involves a
large part of their daily/weekly lives staying at home, without much structure or
stimulus. At other times we are more explicit in explaining the rehabilitative purpose
to the respite activities. Again, suggesting that the respite can help them with
broadening their sense of what they can do so as to help them continue with these
social and recreational things beyond the respite sessions we can provide them with.
• PSR is a cultural and contextual framework. It is a language and has conceptual underpinnings that are value based. When we apply PSR principles in our work approach with clients, this involves notions of maximising a C:\kong\finsih convertion\word\V.doc Page 4 of 12 person’s full human capacity through growth and change. We endeavour to espouse an individual’s rights and responsibility for self determination and we work with an individualised rehabilitation plan that allows for unique tracks of progress and regression. We are asking clients and carer’s to engage with the culture and values of these principles. • (Working with therapeutic boundaries)It is also relevant to emphasize here, that in applying these principles in our work practice it involves relating to our clients with therapeutic boundaries in place. My experiential understanding of therapeutic boundary is an important one to qualify here. In our work we endeavour to not get in the way of the rehabilitation for our clients. This involves, as a worker, maintaining our focus on the particular purpose we are with a client for. Our role is not simply about sharing time with our client’s, as with other programs that have a focus on a buddy or having a pal as its emphasis, it is more importantly about who we are serving in the interaction. In my working role with a client I have a responsibility to hold the purpose of our interaction and that purpose is working towards the clients’ greater well being. This requires a compassionate detachment, for the client’s sake, we need to be mindful of not becoming too emotionally involved with the client. So to reiterate, our work with clients is not simply a matter of enjoying each other’s company in the context of the respite activity but to remain clear that the relationship with the respite worker does not become more important than the purpose and activity as the focus. • So, again, in light of this context, fulfilling our commitment to our primary task of giving the carer and care recipient relationship a ‘break’ and ‘timeout’ as well as a rehabilitative process for the care recipient, how does this ideal of fulfilling this primary task become complicated? Carer’s are often intensely involved in their caring roles and usually often intensely knowledgeable of, the care recipient. This can be an asset and can also counter the rehabilitation process. Carer’s are faced with experiencing the service provision as an intervention that requires them to relinquish and/or modify their caring role. They are being asked to allow space for the care recipient to falter and fall and change through challenging and sometimes adverse circumstances and scenario’s. A carer’s fears in relation to this, can counter these aspects of the rehab process. My case examples later in this paper will describe more experientially what I have just expressed here. • (Independence)Our work with clients to a significant degree is about imbuing them with a greater sense of independence. Independence from having continued service intervention and less reliance on their carer. How is this measured and by whom? To what degree does the carer feel at ease, with the care recipients independent choices and action based on those choices? What is considered acceptable and tolerable levels of independence from the carer and care recipient relationship? Or put another way, whether the carer is a family or non-family member, how are the relationship constructs and values determining what “independence” for the care recipient, means? While it is often the case that carer’s have difficulty and ambivalence in relinquishing their caring involvement, it is also often true that there are many carer’s who paradoxically and simultaneously experience the level of care they invest as weighty, exhaustive and emotionally draining therefore they value the service intervention being provided and that the care recipient becomes greater able to increase their C:\kong\finsih convertion\word\V.doc Page 5 of 12 ownership of their own self care. I should qualify here that carer’s often speak to me
about this, as acknowledgement of recognising that the care recipients’ increase in
levels of independence is about valuing greater well being for the care recipient. Here
too, I need to emphasize are issues and considerations that we need to be holding in
mind not just at assessments but right throughout the relationship we have with
carer’s and care recipients in the period we are providing service to them.
Dilemma’s and challenges in openly exploring the concept of the ‘respite plan’
with each of the parties who have a vested interest.
Here I would like to return back to a discussion of the assessment process. When the
respite plan is discussed, the goal's clients may want to pursue, the activities they like
to do and/or the social and life skills they want to work on are explored. What has
often occurred in my experience of this process, is that clients are cautiously enthused
about the prospect of a social activity focus or anxiously unsure about having respite.
They are often unclear about what they want to do and anxious about actively
engaging with a worker they do not know, and doing activities that they have either
not done before or have not done for some time. As a practitioner I need to be
respectful about where a client is at with their level of ability to engage and
willingness to engage in this process while simultaneously being supportively
challenging toward them, to be open to participating. The carer is often eager and
keen for the respite intervention to be provided, viewing this as a potential for the care
recipient to be more active, do more, be more, possibly apportioning more expectation
than the client feels capable of doing or wants to do. For example, a carer may want
the client to get up at a particular time and have the respite session, purposefully
placed, to start at 10am in the morning, while the client wants to continue the routine
of getting up at 12pm and having their respite session in the afternoon. I then
delicately need to be aware to meet both needs somewhere in the middle, so my role
becomes suggesting that perhaps the session could commence at 11am. This is a
relatively simple example, but not simple for the carer nor the client because they
both have a vested interest in owning what they want.
What is consistently at play here is the complexity of the relational dynamics, that can
be conflictual, compatible, incompatible, undermining, harmonious and are attitudinal,
cultural and value based, these dynamics are pervasive. They not only influence the
perception of a client’s symptoms of their mental illness; the client’s ‘condition’ is
ensconced in these relational dynamics. Following this point then, it is also my
experience at assessments that there are degree’s of capacity, for transparency about
talking about the client’s mental illness. This is dependent upon where both carer and
the client are sitting with notions of insight and self-awareness and understanding.
The client’s mental health issues can be discussed openly or there is a significant level
of discomfort and covertness in the discussion about care needs and wants, and about
the perceptions of the client’s mental health.
The clinician or other mental health worker is also bringing expectations for the client,
understanding the potential for the psychosocial benefits the respite activity would
have for them. It is also equally true that at times, what is sometimes on the agenda is
that the referring mental health worker and/or clinician is bringing their own
particular wants and needs, to share the load of care and assistance to the client, with
our service. This does not describe necessarily a shirking of responsibility on the part
of the other practitioner involved here, although sometimes this can be the case. My
point here, is that as the respite service provider, there is a requirement to be fully
C:\kong\finsih convertion\word\V.doc Page 6 of 12 aware and mindful of the interplay of dynamics that is as a result of this triangle of care for the client. We are in a position of not providing service design in a one on one context, that is, an arrangement solely between service provider and client. We are aiming to invest in the client’s overall well being and also support the carer and even the referring practitioners goal’s for the client, and this requires us to weave diplomacy and even handedness in approach. At the same time, though, it requires us to also set limits and not agree to service design or perhaps in some cases, provision of service, when we assess that it may be therapeutically not in the client’s best interest. • These examples not only relate to the assessment process, these examples are indicative of the ongoing themes and issues which encompass the assessment process and feature throughout the period that service is being provided.
CASE EXAMPLES (Pseudonyms have been used for each of the people named in
these case examples)
Walter Kilby is a 30 year old client who lives at home with his parents. His parents
are both significantly involved with his support needs but it is my assessment that his
mother takes on the primary carer role. Walter is a person with a very quite and polite
demeanour, he has a particular interest in, and is quite knowledgeable about art style,
history and theory. Walter is also very sensitive about talking about his mental health
and how it impacts on his life. Most dialogue with Walter about his mental health has
been cut short by his definitive response that ‘he doesn’t want to talk about that’. It
was very difficult to engage in any conversation with Walter at the time of the
assessment. Walter had been involved with our service some time ago and there had
been a request for re-engagement with our service as his parents wanted to go on a
holiday.
At the time I met Walter he was at the point of not having much social contact with
people outside his family and his routines in relation to going out and enjoying
himself recreationally and socially where impeded by his high anxiety level. His
rituals and obsessive compulsions around taking his medication featured significantly
for Walter and were and still are, a major part of his wish to have support when his
parents go away and in part, why respite had been requested. Again, to engage in any
significant degree of dialogue at the time with Walter was difficult but his openness to
the idea of respite was there due to his need to have support around his medication
routine. This was not necessarily explicitly described by Walter but was emphasized
by his mother when explaining what she felt Walter’s support needs were. Walter did
not disagree with his mother on her description of these needs and it was my
assessment at the time that it was not his timidity or fear which stopped him from
disagreeing, as it can be in some other family dynamic contexts, for some of our
clients. At this time also, Walter’s mother approached the respite intervention as
predominantly a means to having someone stay with Walter, support him by
observing him taking his medication and possibly do some cooking for him while
they were not there. The time of the respite sessions, was important because it needed
to fit with the timelines that Walter had set around when he wanted to take his
medication, which was some time around 7.30 or 8.00 in the evenings. My response at
the time was that our respite worker could be involved in supporting Walter to do
cooking for himself, as one possible activity focus, but that sessions needed to have a
broader focus than around the theme of food preparation and eating. This was taken
on board by Hannah, Walter’s mother, and we then entered into a discussion of what
C:\kong\finsih convertion\word\V.doc Page 7 of 12 other sorts of activity focus Walter might like to consider doing with the worker. I was also mindful of a need not to emphasize that the medication taking that Walter was anxious about, did not become the dominant focus for the purpose of having the sessions. We have provided Walter, subsequent to the initial re-engagement with our service, several respite packages, designed for the purpose of Walter having support while his parents take a holiday. In these respite intervention times, there has been significant incremental shifts and improvements in terms of what Walter feels comfortable in doing and undertaking as part of a respite activity. One major success has been that the respite worker, through rapport building and developing trust which has involved moving at a pace that feels right for Walter, has taken Walter out for walks along the beach and has taken him out for an early evening meal at a restaurant. There has also been far greater flexibility around the issue of what time Walter takes his meds. It has also been evident that over time, Walter’s mother as his carer, has had a greater understanding of the PSR approach we where wanting to engage Walter in. She has expressed that the purpose and intension to broaden his ownership and independence in the respite sessions has been a valuable process and that this has been compatible with what she values and identifies as what Walter needs. More specifically Hannah has expressed that not only has the respite provision given she and her husband ‘peace of mind…while they have been away….and a break from their caring role.’ Also, that the approach in the respite sessions has been one of the contributors to Walter having greater engagement with his external supports, greater independence and re-engagement in the bigger world’. And when I asked Hannah what her perception of her role as carer, and her caring role was, had it changed, and what had contributed to the change? Part of her response was yes, her perspective had changed and that the main two reasons for this shift were two-fold. One being that her understanding and knowledge of mental illness had increased over time and the other was, ‘seeing Walter’s recovery’, which she identified as being demonstrated in Walter’s capacity to enjoy life more, wanting to do more things and more demonstration of his sense of humour and laughter’. This has been an example of where the approach of the service provider has been meaningful and to an extent compatible with the carer’s perspective in support of the care recipient. Stan and Randal Sebastian Stan and Randal are two brothers, of Sri Lankan origin who live together. Randal is Stan’s carer and is a sibling but has taken on this caring role toward Stan in a very similar way to what we perceive how a parent would undertake the caring role. Randal takes on the full responsibility of domestic maintenance, and for Stan’s physical and psychological sense of safety and support. Stan is continuously experiencing delusional thoughts and he also presents as fairly unwilling and/or unable to engage with any activity. He does not leave the home they share and will not leave the home without Randal. Randal feels that he is almost never able to leave the house for any protracted periods of time. Stan has been chronically unwell for a lengthy period of time but has been assessed as stable by the local area mental health service who last year assessed that he did not require ongoing clinical case management. Stan receives his medications from his G.P, who does home visits to Stan in order that he maintain and monitor his psychotropic medication. Clinicians who have been involved in Stan’s support, have recommended that going on a more modern medication routine with clozapine could improve or better assist Stan. Stan has not wanted to embark on this change of meds to a large extent because it would be C:\kong\finsih convertion\word\V.doc Page 8 of 12 necessary to have weekly medication monitoring for an approximate of eighteen weeks, which would require hospital visits. Randal is a carer who is highly anxious about his brother’s condition and is sensitive in his reactions to Stan’s level of anxiety and fluctuations in his mental health state. Randal often seeks out Crisis Assessment Team (CAT) involvement and becomes despondent when the clinical mental health service and other mental health services do not respond with the immediacy or particular action that he is expecting. The respite program has provided Randal and Stan with respite intervention over six years and this has of course been in home respite. Providing this respite intervention to this client pair has reached and an impasse. Over these years our service has assessed that the carer’s need’s have been very high and our service has weighted more importance on continuing the service provision because of this. But there has been limited capacity for PSR to occur with Stan. There are a number of complex reasons why engaging Stan in PSR has been continuously very challenging for our service. Stan is very resistant to doing anything outside the home, his attention span for any given focus is very limited and when in conversation with any worker presents with being fixated on the topic of the workers family background or marital status. This involves repetitive questioning throughout a given session with him. Much of the time workers have been involved in working with Stan, they describe that they predominantly spend much of their time, limit setting around Stan asking these questions. There is also minimal capacity for workers to become engaged with Stan in a relational dialogue, so the capacity for rapport to build is difficult. Because of this context, setting a goal plan that involves even minimal change toward independence has been met with considerable resistance from Stan. At assessment it was also my experience that Stan’s extent of interaction with me, was engaging me in the same repetitive questioning that our respite staff have described. There was some discussion of goal’s being established around preparing meals and following a recipe for a particular dish that Stan may attempt to do with the worker. Also perhaps interact with playing certain board games. It was also established that Stan had a preference for a female worker and that he also had a preference for the worker to be young rather than more mature. We subsequently provided a number of female workers, both younger and older, and patterns emerged that indicated that Stan was more comfortable being in the company of a younger worker. It became more evident that it was less challenging for him, with a younger worker and less experienced worker, than a more experienced worker. The age significance was predominantly due to experiencing older workers as more challenging in the ways in which they attempted to engage him in a psr approach. What has come to the fore and is more overt now that we have provided respite over a protracted period of time, are the emerging themes that are at play. And that also, by continuing to provide service without enough emphasis on the psr aspects which would assist in Stan’s greater well being, our service is being increasingly complicit with keeping the status quo. We are not assisting Stan in a degree of meaningful rehab that is facilitating change and we are not assisting Randal to increase his understanding of how his approach to supporting Stan is countering any rehab process we are attempting to put in place and therefore also lessening the burden of care that falls on him. Taking this all into consideration, I as program manager decided to review and explore more openly in a discussion with R, the difficulties we were facing in continuing to provide service. Through a series of discussions I had with Randal and with other clinicians supporting Stan, we organised a meeting at their home to discuss C:\kong\finsih convertion\word\V.doc Page 9 of 12 support approaches and difficulties in providing service to Stan and Randal. This
meeting was challenging because Randal perceives that service providers are not
supporting him in not providing more service and service that is designed in a manner
that fits with existing patterns of relating that Stan and Randal have in place.
As a practitioner I observe and am sensitive to the paradoxical stress that Randal
experiences in his wish to care for his brother. The carer and care recipient are
engaged in a pattern of relating where often Randal’s immediate response to Stan is to
placate him so as to de-escalate, as he perceives it, Stan’s level of unwellness. Randal
has great difficulty in discerning between anxiety levels and how he names Stan
becoming ‘unwell’ with his mental health. Co-dependant ways of responding which
make it difficult for Randal to change his circumstances in terms of his own
independence from his caring role toward Stan and subsequently decreasing the
dependency Stan has on him. The carer’s intensions are loving and caring and
counterproductive. Service provision has been asked for in terms of what Stan is most
comfortable with, but doesn’t encompass a rehabilitation process that is culturally
compatible with our service provision. I use the word culturally here, because as I
mentioned earlier the carer’s perspective as well as ours and also the client’s are all
from perception, perspective, understanding/insight and framework – whether that be
a service provider’s or a families framework.
We discussed with Randal other service options that we suggested may benefit him in
his coping with caring for Stan and this included the suggestion of counselling for
himself. I also expressed that I would be able to consider providing another respite
package, but that it would need to include incremental moves forward that we would
attempt to discuss and design together, with a view to broadening the scope of
activities that Stan would commit to engaging in doing.
Feedback from feedback sheets
To qualify the impact of service provision for our clients, both carers and care
recipients, following are some quotes from the feedback sheets we ask clients and
carers to fill out at the completion of service provision.

Client Feedback
“It made me firstly make the commitment of going out every fortnight, I was excited
because I had something to look forward to. I don’t normally go anywhere and this
was an opportunity to socialise and interact with other people and see things and
places that I wouldn’t normally do”.
“It made me open up to people and not be scared. I was confident when I went out – it
was a good experience and has changed me”.
“It made the way I have to live at least bearable and manageable – just to feel I exist
in the community instead of being hidden away”.
Carer Feedback
“I believe the thorough assessment (initial) of Walter (by Sandra), and the careful
choice of worker (Lorraine) has enormously influenced the successful outcome. I
would hate cost cutting by the government to compromise this process. The inclusion
of the carer (me) in the information gathering for the assessment and the input by the
service to understand the carer’s needs has also led to successful outcome. I wish to
C:\kong\finsih convertion\word\V.doc Page 10 of 12 add that the creative approach taken by the service to provide services, the monitoring of the outcome of respite, after each respite period (of both Walter and me) does influence the success of the ongoing improvements in Walter”. “I thank God for your presence as someone outside the family circle that can motivate persons with an opportunity to join mainstream society again – doing things they have forgotten they could do”. “.a certain limited confidence has been returned to my son. We now walk the dog regularly and sometimes visit the milk bar”. “.the mental relief was so great for me because otherwise my daughter would have been house bound during the long summer holiday. I am too old to visit her often. This service gave her a chance to have contact with the outside world”. “Thank you very much for providing this service to my mother and me. We have both benefited from it. It gave my mother self-confidence and allowed her to focus on things besides her problems”. C:\kong\finsih convertion\word\V.doc Page 11 of 12 C:\kong\finsih convertion\word\V.doc Page 12 of 12

Source: http://www.richmond.org.hk/aspac2004/aspac2004notes/abstract/V_abs.pdf