Palliative care

RESPITE CARE NEEDS EOREAMILIES OE CHILDREN WITHUEE-UMITING CONDITIONSJanet Bowman, Ruth Butcher and Sue Dolby discuss how a children's charity has

developed a resource allocation tool to use in partnership with service users

SummaryThe Framework for Respite in Partnership with Parents (FRiPP), developed by

the Jessie May Trust is a tool to enable a standardised and equitable allocation

of a limited resource. FRiPP reduces the opportunity for subjective allocation of

respite-based care stemming from the professional-led model of telling families

what they need. The tool is aimed at engaging families in identifying and

articulating the support they require. After a successful pilot and evaluation, FRiPP

is now used for all families on the Jessie May Trust's caseload. The authors reflect

on the tool's development and implementation process in the context of promoting

and protecting partnership working.

Keywords

Family-centred care, life-limiting conditions, palliative care, respite

THE CONCEPT of working in partnership withservice users is now an expectation of anycare provider. However, putting this conceptinto operation and demonstrating and provinggood practice can be chcillenging. This articleis a reñection on the process undertaken by achildren's charity, the Jessie May Trust, to develop aframework to guide the cdlocation of its respite careresource in partnership with the parents and carersin receipt of the service.

BackgroundThe Jessie May Trust is a registered charity,established in 1996 as a palliative care servicefor fcimilies of children and young people with

Pictured opposite: Ruth Butcher life-limiting conditions. It aims to enhance thewith Kelly Starzec at a fun day ,. ..,.,. r , , . , . . . . ., . , ,organised for families. Picture quality of hie ior the child and family through theused with consent provision of respite, palliative, end of life care and

bereavement support before and after the child'sdeath. Support and care is provided in the family'shome by members of the care team which comprisesregistered children's nurses, qualified nursery nursesand a bereavement support worker.

Central to the philosophy of the trust is theprovision of needs-led services and recognition thatthe pEirents, carers and young people who use theservice cire the experts in realising these needs. Thelevel of support requested by each famil> varies. Itcan change at short notice and is influenced by thechild's physical care requirements and the social andemotional needs of the family.

In 2001, families on the caseload were giventhe opportunity to indicate how satisfied they werev\ith the service and to suggest improvements.The families were interviewed by an independentresearcher who reported back to the trust. Theresults indicated that overall, families were verysatisfied and valued the services provided. However,one of the themes that emerged was a request fromparents to have more information on how respitevisits were allocated. It became evident that toachieve genuine partnership working the serviceneeded to develop a process of assessing needs thatdirectly related to the allocation of respite visits.This process aimed to:• Enable an equitable, consistent and fair allocation

of resources.• Promote transparency and objectivity.• Promote the use of listening and reflection

to enable fcunQies to articulate their needs(Heimann 2000).

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Palliative care

It also aimed to promote the principles ofpartnership working in relation to:• Active participation of families and recognition of

their expertise to lead on identifying their needs.• Opermess, honesty, mutual respect and trust.• Negotiation and agreement.

Assessment and allocation toolA review of the literature in 2001 revealed fewassessment tools focused on respite allocationappropriate for use in a children's palliative careservice. Most of the tools were symptom orientatedand based on an 'expert' medical model. The teamaimed to develop a tool based on a biopsychosocialmodel, enabling a holistic and systemic approach tounderstanding, identifying and assessing the child'sand fcimily's needs with the latter's participation.

The most valuable sources of informationinfluencing the development of an appropriatetool came from sharing experiences and workingcollaboratively with other professionals and respiteservices. Personal communication with three teamsin particular influenced the development of thetool. These were the Gwent, Chase Hospice andthe Oxford respite teams. The Jessie May Trustteam hoped to mirror Chase Hospice's dependencyscoring system, which looked at the child's careneeds and those of the whole family. It cdso hopedto reflect the simplicity' cind clarity of the headingsin the Oxford respite team's tool.

Formats for the tool were explored. The teamSciid the most pragmatic approach was to use amatrix-based table. This was influenced by theframework for assessment of children in needand their families being implemented at the timeby the Bristol Area Child Protection Committee.This framework enabled children to be assigned a'need' code and a 'response' level. The frameworkalso enabled children to move from a low priorityto a rapid response category, without the needfor a detailed reassessment (Area Child ProtectionCommittee 2002).

The combination of a matrix approach andthe Oxford team's dependency tool provided thefoundation for the Jessie May Trust framework,which became known as the Framework for Respitein Partnership with Parents (FRiPP). The matrixconsisted of the following needs: nursing care;supervision; family support and emergency carerated across low, medium and high categories withan initial points scoring system of zero to five. Adraft version of the assessment tool was sharedwith three families on the caseload to review thecriteria and scoring mechanism for accessibility,relevance and accuracy. Their feedback led to

increased 'care need' examples under the caheadings and a wider range of scoring (zero toeight) to enable greater sensitivity to individualvariability in need.

The families welcomed FRiPP as a move toenable them to articulate their requirements andclarify their expectations of the service. This wasimportant in achieving the service's aspirations toestablish a model of working in partnership. Theteam was mindful of preventing discriminationagainst families who under-report their needs. Thereasons families give for this may be because:• They believe they have not been fuUy informed

about the service.• Personal, subjective assimiptions are made about

what it is reasonable to ask for and the familythen compare their requirements with those ofother, possibly 'needier', families.

• They were inexperienced at articTilating theirneeds, possibly because the families are at anearly stage of their child's journey.

B Difficulties occur when asking for support whichmay feel incongruent with their family culture orexpectations of their role as a parent (McGrathand Grant 1993).

SurveyTo test the face validity and pragmatic applicabilityof the assessment tool, ten families (20 per cent ofthe caseload at that time) were recruited to use itas part of the annual care review process in placeat the trust. The families were also asked to ful in aquestiomiciire at baseline and at three months followup. This survey used five-point Likert scales forparents to rate the following:: 1 Whether or not FRiPP was a good idea.m WTiether or not the aims of FRiPP and how it

worked were understood.• The clarity and comprehensibiUty of the

information booklet.^ Whether or not the FRiPP process felt fair,

equitable and transparent.• Whether or not the families felt as involved

as they wanted to be in the cillocation of theirrespite provision.

Nine families completed baseline questionnaires andeight families responded at follow up. The data atfollow up indicated that the families approved ofFRiPP, finding it understandable with clear advice onhow to use it. These families cdso rated the processas fciir and equitable, with their involvement beingas much as they wanted. Additional commentsindicated that families welcomed the tréinsparencycind improved information sharing that the toolenabled (Bowman et al 2004).

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It was agreed to undertake a gradualimplementation of the framework to the remciinderof the existing caseload and to introduce it from thebeginning for new referrals. Three core standardswere identified for future audit and evaluation oncethe framework had been fully implemented (Box 1).It was recognised that the scoring system wouldneed regular review to ensure equity whatever theoverall resources available. Table 1 is an exampleof the FRiPP criteria and scores. Since the FRiPPreview, the data have been amended to includefour columns to help the scoring process.

Negotiating allocationThe tecim wanted to mcike use of the tool standardin a process of assessing, negotiating andagreeing allocation of respite hours in partnershipwith parents. The process of initictl service-ledassessment leading to a care agreement and regularreviews was adapted to integrate the new tool toform an overall framework for the cillocation of therespite resources. This is summarised in Figure 1,page 18 (adapted from Dale 1996).

Reflections on the processThe FRiPP is now used for all families on the JessieMay Trust caseload and has been subject to anindependent evaluation by the University of theWest ol' England incorporating the above stcindards.This evaluation prompted the authors to reflect onthe process of developing and implementing theFRiPP with a focus on the promotion and protectionof partnership working described by Davis andMeltzer (2007). They describe the characteristicsof an effective partnership as:

Working closely together with activeparticipation and involvement.Sharing power, with parents leading.

• Complementciry expertise.I Agreeing aims and process.Í Negotiation.1 Mutual trust and respect.' Openness and honesty.

I Clear communication.In this context the following reflective pointshave arisen:

Listening to families An important aspect of theFRiPP has been to enable families to use this tool totake the lead in conversations, tell their stories andto help contextualise their needs when consideringthe scoring ratings on the framework. In clinicalsupervision, staff have reflected on the impact ofactively listening to families when they shcire theirexperiences and understanding of their situation.

Example of the Frarrn

criteria and scores

*Six to eight

ie^rt^n|^Mra|^|^arhMrchji^w|t|i Parents' ^ ^ H

Nursing care High level of nursing

needs required, for example

ventilation, total

parenteral nutrition.

Additional needs, Usual care for a child

Supervision Constant supervision

required required because of age,

health or behaviour.

for example

medications,

hoisting,

gastrostomy,

tracheostomy.

Requires

supervision on

a regular basis.

of this age.

Can be left in a safe

place for short periods

or is able to ask for

help if needed.

*Range of score (Eaton and Goodenough 2009) families can allocate themselves if they feel they meet the

I criteria in each column.

Standard 1

Standard 2

Standard 3

100 per cent of service users will rate

their understanding of Framework for

Respite in Partnership with Parents as

four or more on a five-point scale

(zero = not at all, five = fully),

100 per cent of service users will rate

their perception of fairness and equity

as four or more on a five-point scale

(zero = unfair, five = fair),

100 per cent of service users will rate

their level of involvement in as much

as they wish it to be at four or more

on a five-point scale (zero =poorly,

five = fully).

This has included adopting a negotiating positionwhich respects the parents' expertise cuid is sensitiveto the emotional content of the discussion. Ongoingcommunication skills treoning and reflective practicesupport stciff through this process.

Reduced opportunity for subjective allocationof respite care The framework has reduced theopportunity for subjective allocation of respitecare based on the professional-led model of tellingfamilies what they need and ¿illocating care onthat basis. The authors argue FRiPP engages thefamily in identifying support required and howthese needs might best be met. They believe byhaving a transparent, standardised framework anda negotiating process, staff are less likely to findthemselves telling families what they need.

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Palliative care

Equitable ídlocation of resources The authorsmaintcun that the cillocation of a limited resource ismore standardised and equitable and will ensure thatall families ha\ e the Scime opportunity to understandhow the service works and what they can expect.However, promoting a respite service has sometimesencouraged families to believe that respite care is anentitlement. Skuful and clear communication at thenegotiating stage has been required to explain whatthe Jessie May Trust hopes to pro\1de. While theprocess of using the framework encourages familiesto score themselves and test their likely allocationbefore the meeting, this has sometimes encouragedfamilies to expect a level of service that the charity'is unable to fulfil. This is when it has been helpful toensure families understand that it is a partnershiprather than a consumer-led model that is being used.

Staff have developed clecir communication skillsto explain the available resources and how these eireprioritised, such as cancelling visits because stalfneed to provide end of life care for another family.The authors say families have a better understandingof what the service can bring the partnership whichhas helped to manage families' expectations.

Families can under-report needs in somesituations staff have continued to feel thatfamilies are under-reporting their needs. In thesecircumstances it ma>' be appropriate to respectfullyand non-judgementally challenge a family'sself-assessment score. But staff must continueto value the family's culture and their perceptionof their need using sensitive and respectfulcommunication skills. Some staff believe this can beeasier when they already have a relationship withthe family because they provide respite and supportin their home. But, through reflective practice, theauthors have also become aware that this fcimiliaritycan help create a more subjective and expert-ledposition. Challenging this in clinical supervision hashelped staff to develop their skills and recognise thechiiracteristics of an effective partnership.

Need for staff training and parent support Thetool was designed to be used more flexibly by staffand parents in recognition of ongoing changesin requirements. The FRiPP score has sometimes

'ocess to negotiate respite allocation in partnership based on

Framework for Respite in Partnership with Parents (FRiPP)

Referral process:

Information on what the Jessie May Trust can

provide - the FRiPP

\

Carer's perspective

Young person's perspectiveThe Jessie May Trust

Negotiation based on the FRiPP

Perceived needs-* »-available resources

Care agreement completed and service offer made

(Adapted from Dale 1996)

remained unaltered despite changes in care becausereassessment of need often onl>' tcikes placealongside the annual care review. On reflection, anarea for future development is staff trciining andparent support to enable more proactive, regular useof the FRiPP between the annual care reviews.

ConclusionThe process of developing and implementing theFRiPP has increased the active participation andinvolvement of service users. This involvement hasdevelopment of mutual trust and respect at its core.The framework's outcome can only be achievedby negotiation. It encourages the expert positionof Ccirers and young people, and VEilues the realityof their experiences eind perception of their needs.Families can lead the discussion on what the JessieMa>' Trust may be able to offer towards meeting theirneeds. Partnership working for the service has mov edfrom a theoretical concept to an operational realitywhich continues to develop with the FRiPP at its core.• For a copy of the document, emciil careteam@

jessiemaytrust.org.uk

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Janet Bowman is chitdren'snurse and Ruth Butcher is careteam leader at the Jessie MayTrust, Kingswood, BristolSue Dolby is a consultantclinical psychologist, the BristolRoyal Hospital for Children andclinical supervisor to the JessieMay Trust

References

Area Child Proleclion Commiltce (2002)Multi-Agenc)' ['rticeäures for Working withChtldren in Need ilncluding Those in Need ofProtection) and their Families. ACPC, BristoL

Bowman J et al (2004) The .Jessie Slay Trustewurii for .'MliKating Respite Care in

i'annenhip wiih Parents and Carers iThe Jessie May Trust. Bristol.

Dale N (199(i) Working wim Families of Children Eaton N, Goodenough T (2009) Ev-aluation ofwith Special Needs: Partnership and Practice.Routledge. London.

Davis H, Meltzer L (2007) Working inPartnership through Earfy Support Training.http://tinyurl.coin/3detsjs ÍLasI accessed: June14 2011.)

the Framework for Respiie in Partnership withParents ami Carers (FRIPP). Centre for Child andAdolescent Health, BristoL Unpublished

Heimann K (2000) Family needs: how do weknow what they want? Paediatric Nursing. 12,7.31-33.

iMcGrath M. Grant G (199:!) The life c) cic andsupport networks of families with a ix'rson witha leamitig difficulty. Disability, liandicap andSociety. 8, 1, 25-40.

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