The need for future alternatives: an investigation of the experiences and future of older parents...

O R I G I N A L A R T I C L E

The need for futurealternatives: an investigationof the experiences and futureof older parents caring foroffspring with learningdisabilities over a prolongedperiod of time

Deborah Cairns, School of Health Sciences and Social Care, Brunel University, Uxbridge, Middlesex,

UB8 3PH, UK (E-mail: [email protected]), Debbie Tolson and Chris Darbyshire,

School of Health, Glasgow Caledonian University, Cowcaddens Road, Glasgow, G4 OBA, UK, and

Jayne Brown, Sue Ryder Care Centre, School of Nursing, Midwifery and Physiotherapy, Medical

School Queen’s Medical Centre, University of Nottingham, Room B42, B Floor, Nottingham, UK

Accessible Summary • This article reports on interviews with eight older parent carers who cared for

their children with learning disabilities.

• The aim of this study was to understand parent carers’ experiences of caregiv-

ing and their views on the future.

• The findings revealed the following:

• Parents lacked support

• Parents did not receive enough information and practical resources

• Some parents continued caring despite poor mental and/or physical health

• All parents were concerned about their child’s future

• Most parents said that they were unable to think about their future and their

needs

Summary This article reports on the results of a qualitative study (in-depth interviews) car-

ried out in the United Kingdom as part of a larger (two-phased) study investigat-

ing the experiences, health and future perspectives of older parent carers (six

mothers and two fathers) of offspring with learning disabilities over a prolonged

period of time. The objectives of this article are twofold: (i) to present a conceptual

framework, grounded in the experiences of older parent carers who participated

in this research and; (ii) to come to a more in-depth understanding of older parent

carers’ experiences of caregiving, and views on their own future. A detailed analy-

sis of the data revealed important issues with regard to prolonged caregiving.

Overall, older parent carers felt that they lacked support, information and practical

resources throughout their caregiving career. Some parents continued in their care-

ª 2012 Blackwell Publishing Ltd, British Journal of Learning Disabilities doi:10.1111/j.1468-3156.2012.00729.x

British Journal of

Learning DisabilitiesThe Official Journal of the British Institute of Learning Disabilities

giving role despite their deteriorating mental and/or physical health as there

appeared to be no alternative, and most parent carers expressed that they were

unable to think ahead to their own future and needs owing to the absence of suit-

able care alternatives. The findings suggest that there is an urgent need to review

how individuals with learning disabilities and parent carers are supported

throughout their lifespan.

Keywords Caregiving, dependent offspring, future alternatives, learning disability, older

carers, parent carers

Introduction

The past thirty years have witnessed an astonishing

growth in interest in family carers as the main source of

support for people who require help to live in their own

homes (Hanson et al. 2006). For example, in the mid-

1980s, empirical research addressing the concerns of older

parents of adults with learning disabilities began to

appear in the literature with some regularity (Roberto

1993; Scorgie & Sobsey 2000). However, family caregiving

has long been informed by an understanding of stress as

a central part of the caregiver experience, reflecting the

continuing influence of a deficit model that implies a

pathology within family functioning (Grant & Ramcharan

2001). More recently, there has also been a growing

awareness of the potential sources of satisfaction and

reward in family caregiving (Jokinen & Brown 2005; Scor-

gie & Sobsey 2000). For example, in a Canadian study by

Jokinen & Brown (2005), parents reported overall satisfac-

tion in a number of quality of life domains such as lei-

sure and life enjoyment. These parents also reported

many positive reflections about their sons and daughters

as well as their experiences of lifelong caregiving. Never-

theless, these parents described being particularly con-

cerned about the high degree of uncertainty with service

levels; concerns for the health of all family members;

long term living arrangements; and the future role of sib-

lings when these parents were no longer able to continue

caregiving.

Services and support for people with learning disabili-

ties and family carers have improved. However, there is a

real danger that they are not being integrated into other

strategies and mainstream services (Foundation for People

with Learning Disabilities 2005; Weeks et al. 2009). Fur-

thermore, many older parents reported being concerned

that their own intimate knowledge and understanding of

their offspring’s needs is not respected and taken on board

by various professionals (Foundation for People with

Learning Disabilities 2005). These parent carers also feel

that they are prevented from achieving their personal

goals owing to their heavy caring responsibilities (Ramch-

aran & Grant 2002; Todd & Shearn 1996), and there is little

in the way of research that explores what these goals are.

Parents also seem concerned that talking about themselves

could be interpreted by others as both selfish and in com-

petition with their adult offspring with learning disabili-

ties (Todd & Jones 2003). It is therefore crucial to listen to

parent carers if intervention to support their needs and

expectations are to be effective. In addition, although there

is a considerable amount of research looking at the physi-

cal and mental health of different types of carers (Chou

et al. 2010; Jones & Peters 1992; Pinquart & Sorensen

2003), this is somewhat limited for older parent carers of

adult offspring with learning disabilities.

Design and methods

The aim of this study was to gain an in-depth understand-

ing of the experiences, concerns and future perspectives of

older parents with life-long and continuing full-time

responsibilities caring for their child with a learning

disability.

Eight in-depth semi-structured interviews, carried out

on a one-to-one basis, were completed with a convenience

sample of six mothers and two fathers from different fam-

ily units, who had cared for their children since birth. The

parents were aged between 65 and 89 years. Six of the

eight parent carers were widowed, and two were married.

All offspring were diagnosed as having moderate to

severe learning disabilities in the first few years of their

life.

Upon receiving ethical approval for the study from the

Central Office Research Ethics Committee (COREC), par-

ticipants were recruited from three Scottish local authority

regions, using a snowballing technique, contacting social

workers and voluntary organisations. Older parent carers

ª 2012 Blackwell Publishing Ltd, British Journal of Learning Disabilities

2 D. Cairns et al.

received a letter of invitation to take part in the study via

gatekeepers with access to their contact details. Five par-

ent carers were recruited using this method. Two parent

carers inquired about taking part in the study after being

informed about the research via other carers who had

received information through the post. In addition, a letter

was also received from a parent carer who had heard

about the study from an acquaintance and expressed an

interest in being interviewed. Recruitment took place

between July 2008 and January 2009.

Once contact had been established, interviews were

arranged at a time, date and place convenient to the par-

ticipant. Arrangements were made by telephone, and a let-

ter was then sent out confirming the agreed date and time

of the interview. All of the tape-recorded semi-structured

interviews were carried out in the participant’s home. In

two of the interviews, another family member was present

for the interview. In one case, the nondisabled daughter of

a parent carer was present during the interview. In the

other interview, the wife of the husband being interviewed

asked to be present throughout. Rodwell (1998) recognises

that from time to time, unexpected individuals may

include themselves in an interview session, and this high-

lights the need for flexibility on the part of the inter-

viewer. In both of these situations, it was considered

important to include these additional family members

within the interview as their presence served a purpose.

The participants being interviewed had indicated their

desire for this family member to be present. In both cases,

these individuals provided further information and

accounts of experiences.

The interviews varied in length between 50 and

100 min. An interview guide was followed to ensure cov-

erage of key points (experiences of caregiving and their

future perspectives). The interview was carried out in a

conversational manner, and participants were encouraged

to talk about the things they felt to be most important in

their experiences of being a parent carer. More specific

questions were asked when participants described an

experience broadly. Each participant was assigned a pseu-

donym for transcription of the interviews.

A constructivist methodology was used (Rodwell 1998)

with the intention of creating a joint understanding,

shared by the interviewer and the participant, of each par-

ticipant’s experiences. Constructivism is a theoretical

approach to social science which is based on the assump-

tion that people create their own social world. It recognis-

es that there are multiple realities and acknowledges the

mutual creation of knowledge by the participant and the

researcher (Charmaz 2000). Grounded theory (Glaser &

Strauss 1967) was used as a method of analysis as this is

considered appropriate within constructivist research

(Charmaz 2006; Guba & Lincoln 1989; Rodwell 1998). Key

features of the interview methods are shown in Box 1.

Box 1 Features of interviews

• Information leaflet and consent form given to participants

• Consent forms signed by participants after reading information leaf-

let and having the opportunity to ask researcher questions

• Ensured accurate understanding throughout interview

• Shared own views and experiences with older parent carers

• Hermeneutic cycle: feeding insights from earlier interviews

• Summary of interviews posted to older parent carer for comments

• Summary of overall findings posted to older parent carers for com-

ments

Analysing the interviews

The approach to analysis was inductive and aimed to

develop theoretical propositions which would accurately

reflect the participant’s feelings, thoughts and actions

(Maykut & Morehouse 1994). The process of analysis was

ongoing and consisted of being immersed in the data and

reading through it several times. A bottom-up approach

was then used to see which categories and themes arose

naturally from the data, rather than having prescribed cat-

egories and trying to fit data into these. Charmaz (2000)

states that qualitative researchers should ask questions

and follow hunches, but not force data into preconceived

categories. This approach to data analysis ensured that the

current study was consistent with the approach outlined

by Rodwell (1998) and Lincoln & Guba (1985). At this

stage of analysis, important elements were identified, but

complete details of the elements and their relationships

had yet to be fully constructed. This occurred during the

formal process of data deconstruction and reconstruction.

It was at this stage that the techniques of grounded theory

building were most apparent (Rodwell 1998: 154). In con-

structivist research, the process of creating a grounded

theory involves ‘unitising’, as part of the deconstruction

process, as well as ‘categorising’ and ‘reconstruction’ in a

constant comparative approach.

The qualitative data analysis computer programme

N*VIVO was used to unitise and categorise the data.

Rigour

To ensure that the constructivist research was deemed rig-

orous, the Trustworthiness and Authenticity criteria (Guba

& Lincoln 1989) were adhered to. Trustworthiness attends

to the quality of the research product (see Table 1), while

Authenticity attends to quality in the inquiry process (see

Table 2).

Results

The aim of the interviews was to explore the experiences

and future of older parents caring for offspring with


An investigation of older parents caring for offspring with learning disabilities over a prolonged period of time 3

learning disabilities over a prolonged period of time. Each

older parent carer provided rich and detailed descriptions

of their experiences of caring for their offspring with

learning disabilities. For all, this was a journey that was

unanticipated and unplanned. In effect the caring role had

taken over their normal life and resulted in participants

embarking on a new and challenging journey during

which they had little knowledge or advice.

The participants’ accounts, while being unique to them,

nevertheless revealed a number of common themes that

were a feature of the complex and challenging experience

of caring for an offspring with learning disabilities (see

Fig. 1). These themes, which were derived from partici-

pants’ reports of their experiences, were consistent across

parent carers’ accounts and have been termed ‘a life not

foreseen’, ‘going it alone’ ‘reaching a decision’ and ‘near-

ing the end’, and they describe in the order:

1. The experiences of parent carers from first realising that

their child had a learning disability in the early years to

the present day;

2. The many obstacles parent carers have faced and con-

tinue to face trying to ensure the best for their offspring

and themselves;

3. The current situation parent carers are in and their ever

present awareness of their health, ageing and making

the decision to continue in their role as carer; and finally

Table 1 Trustworthiness Criteria for evaluating research within the constructivist paradigm

Trustworthiness Criteria

Criteria adapted

from Guba &

Lincoln (1989) Definition Examples of criteria being applied in current research

Credibility The depth and scope of the phenomenon are

understood

Undertaking semi-structured interviews. Interacting with participants over an 8-

month period, building a relationship and trust.

Dependability The appropriateness of methodological decisions is

demonstrated

Taking notes in a research diary enabling key insights and decisions to be

recorded. Using N*VIVO programme to create a record of coding decisions

about each element of data.

Confirmability Findings are grounded in the data Demonstrated in part through the use of multiple quotes from the interview

data, confirming that the findings are related to participants and not just a

reflection of researcher’s viewpoint.

Transferability Information created and lessons learnt in one

context can have meaning and usefulness in

another

Achieved by providing a vicarious experience of the setting, the problem and

the findings which should enable the reader to determine the relevance of

findings to their own situation.

Table 2 Authenticity Criteria for evaluating research within the constructivist paradigm

Authenticity Criteria

Original Criteria

adapted from

Guba & Lincoln

(1989)

Renamed Criteria adapted

slightly from Nolan et al. (2003) Definition Examples of criteria being applied in current research

Fairness Equal access not only

throughout the data collection

but also to the results of the

study

The voices of all the major interest

groups heard (in other words, all their

opinions listened to and valued)

Attempts made to engage as wide a variety of

participants as possible

Ontological

authenticity

Enhanced awareness of the

position of self- or own group

The study provides participants with

new insights into their own situation

Parent carers considered their own experiences and that

of others

Educative

authenticity

Enhanced awareness of the

position or views of others

The study helps participants to better

understand the position of other

interest groups

Presentations to enhance stakeholders’ awareness of

older parent carers of offspring with learning

disabilities

Catalytic

authenticity

Encouraging action by providing

a rationale or impetus for

change

The study stimulates or identifies areas

for change

The goal of the present study was not to achieve

change but rather to generate the potential for change

in the future

Tactical

authenticity

Enabling action by providing the

means to achieve, or at least

begin to achieve, change

The study facilitates, enables or

empowers change

Some of the participants in the study may have

changed what they do as a consequence of taking

part in the research. Only one parent carer reported

making a change after taking part in the study


4 D. Cairns et al.

4. Parent carer’s perceptions of their own future and the

future of their dependent offspring.

Throughout each of these phases, it was evident that

parent carers’ primary concern was the well-being of their

dependent offspring and ensuring that they gave them the

best chance in life. However, these parent carers’ experi-

ences highlighted the need for future alternatives to be

made available to better support them as parent carers.

They described their experiences as being very much on

their own with limited support and information being

made available. For these parents, there was little alterna-

tive but to do their best:

Only I can give him the best chance in life and I think

I have done a good job, a very good job indeed

despite the many obstacles that we were faced with

and continue to be faced with… (Mrs Sweeney)

…there is no other alternative but to care and do the

best you can with what you have been given…which

isn’t very much (Mrs Synnot)

It was therefore felt appropriate to term this ‘Future

Alternatives’ (See Fig 1) which these parents desperately

sought to enable them to give their offspring the best

chance in life and the appropriate support to do so.

It must be acknowledged that the subtheme ‘Taking it

on’ was influenced by Nolan et al.’s (Nolan et al. 1996)

temporal model. Furthermore, while the subthemes ‘What

about me?’ and ‘Going it alone’ were not influenced by

previous research, similar findings have been reported

previously in the caregiving literature (Brereton & Nolan

2003).

A life not foreseen

The subtheme ‘A Life not foreseen’ revealed that for all of

the parent carers, the early years were characterised by

the realisation that their child had a learning disability

and that this would have an unforeseen impact on their

lives:

…my life changed dramatically. I was suddenly the

mother of a disabled child who needed round the

clock care (Mrs Madden)

…once we were told we were shocked and we didn’t

know what to do (Mr Quinn)

Figure 1 The conceptual categories and

substantive codes associated with future

alternatives.



Each of these carers made the decision to take on the

responsibility of caring for a child with a learning disabil-

ity as described under the subtheme ‘Taking it on’:

I am responsible for them. I brought them into this

world and I should be here for them, that’s what I

feel (Mrs Kinnear)

These parents had not anticipated caring for a pro-

longed period of time as they were informed by health

professionals that their child had a short life expectancy.

Thus, the uncertainty and unforeseen future that these

parents’ experienced was evident throughout the years

with the realisation that they had many years of caring

ahead of them, described under the subtheme ‘In it for the

long haul’:

I think back then (1982) it suddenly dawned on me

that this was not going to stop any time soon and that

I would be doing this for a number of years (Mrs

Sweeney)

Recent research undertaken in Castle Douglas and

North Ayrshire by Enable Scotland (2008) reported that

the general feeling from family carers in the early years

was that professionals expressed very low expectations of

people with learning disabilities, in terms of their lifespan

and of what they would be capable of achieving. Thus,

like the current study, for these family carers they too

had not anticipated the prolonged nature of caregiving.

For parents in this study, caring for their offspring was

clearly the centre of their life. However, as well as being

faced with the reality of a life that they had not antici-

pated, they were also faced with a future of caring with

no end in sight and felt like they had been forgotten

about. This was discussed under the subtheme ‘What

about me?’:

Every day I get up and do the same thing…every

day…he is my life. He needs me to wash him, clothe

him, feed him, give him medication, keep him com-

pany, entertain him, ensure he has the best life possi-

ble…so when you look at that there is no time for me

(Mrs Madden)

These findings reinforce findings of the previous

research where the parent carers reported a desire for sup-

port to ensure that they had time to themselves to pursue

other interests and to spend time with their family and

friends (Arksey et al. 2007). MacLellan et al. (2002) also

reported on how carers in their study reported seldom

being asked about their own needs.

Going it alone

The subtheme ‘Going it alone’ revealed that for all of the

parent carers, the uncertainty and unforeseen future that

they faced, and continue to face, was very much depen-

dent on the support and information they received:

I have just given up depending on other people

because I’ve been let down so many times in the past

(Mrs Smyth)

‘Being supported’ was a subtheme that captured the

importance of family and friends in helping parent carers

maintain their health and cope throughout their caregiving

career:

I cope because I have a wonderful network of sup-

port. I have my family and friends who are my sup-

port and that allows me to cope. Without them I

don’t know how I would have coped over the years

(Mrs Godfrey)

Family cohesion togetherness has been identified in

research as an important mechanism for families caring

for someone (White & Hastings 2004). While family sup-

port was evidently critical, this did not take away the guilt

that some parent carers felt about relying on them to deal

with the challenges of caregiving:

She [non-disabled daughter] is doing most of the car-

ing in my house and I feel quite guilty about it…and

I feel that when she comes in here she shouldn’t be

doing what she is doing. If she didn’t do it then who

would? (Mrs Godfrey)

However, it is clear that these parents simply had no

alternative but to go it alone as limited alternatives were

made available to them:

Caring is constant and you have no one to turn to.

You are very much on your own because you do not

like to ask family for help unless it is a real emer-

gency and social work can’t seem to help when you

do ask (Mrs Sweeney)

Similar findings were reported by Enable Scotland

(2008) who found that many older family members in

their study recalled a lack of information being provided

to them by professionals when their sons and daughters

were born. The consensus was that there was little sup-

port and information available and what they were told

tended to be negative. There were isolated incidents

where individual professionals had been very support-

ive, like the current study, but in the main families were

very much left to their own devices to bring up their

child with learning disabilities. Although most of the

parent carers in this study received minimal support

and advice in the early years, most reported that

services and support had improved somewhat over the

years.

The subthemes ‘Being left in the dark’ and ‘Being

ignored’ by health and social care professionals capture


6 D. Cairns et al.

parent carers’ experiences throughout most of their care-

giving life:

It is true that there is no real advice. If you go to

find…you lift a phone to phone someone and they lift

it up and pass you on to someone else and then

they’ll put you on to someone else and that’s famous

(Mrs Godfrey)

When I seen them [nurse] giving him the wrong med-

ication I said to them…I said ‘that’s not what he

gets’… ‘Well it’s not in our notes’ she said. ‘So I’m

[participant emphasis] telling you!’…He was falling

all over the place. So we actually spoke to the com-

munity nurse and they went up to the hospital to see

them… They wouldn’t listen to me! (Mrs Kinnear)

All parent carers felt that they were at some point ill-

informed about services that they were entitled to, from

early on in the caregiving experience to present day. As a

result, most felt let down and gave up on the services

which were available to them, and this remains the case

today. This supports previous research where parent ca-

rers reported finding it hard to access information and

advice from service providers, often waiting long periods

of time for their call to be returned (Kelly 2003) or having

requests for help rejected (Hubert & Hollins 2000).

Reaching a decision

‘Reaching a decision’ describes a stage that was at the fore-

front of most of these parent carers’ minds. Some parents

wished for their offspring to remain at home for as long

as possible as they were happy in their caregiving role

and with the support they received. They considered their

relationship with their offspring to be reciprocal, and this

was captured under the subtheme ‘Wanting to continue’:

I’m happy with her here. I have everything I need.

I’m happy with the support I get, the hours I get off,

so no – I wouldn’t want her to go. I like her here. We

are good for each other. We keep each other com-

pany…so no (Mr Quinn)

These parent carers were satisfied with their lives and

described a range of inter- and intra-personal dimensions, as

described by Nolan et al. (1996), such as the ‘bond’ with their

offspring (interpersonal) and deriving a sense of personal

fulfilment, and increasing selflessness (intra-personal).

I’ve brought her up to the best of my ability and seen

her grow and develop…it’s a real pleasure. Every day

I see her and she’s my ray of sunshine. She’s a joy to

be with (Mrs Smyth)

seeing him happy and content makes it all worth-

while (Mrs Madden)

These quotes resonate with previous caregiving litera-

ture illustrating that the caring relationship can be mutu-

ally beneficial to both the parents and offspring with

learning disabilities (Dillenburger & McKerr 2009; John-

ston & Martin 2005; Scorgie & Sobsey 2000). Thus, caring

can be beneficial to both the recipient and the carer

because of the reciprocity between them.

For other parent carers, however, they wanted to con-

tinue caring as they lacked trust in others to care for their

offspring and were unaware of the support available to

them:

…If he were to have his own place he would need

someone to care for him and I don’t trust anyone to

care for him in the same way that I do… (Mrs Godfrey)

The remaining parent carers in this study had begun to

seriously question their ability to continue caring, and this

is captured under the subtheme ‘Time to let go?’:

I’m at an age where physically and mentally I’m

struggling a bit and that worries me. I need a break

now… (Mrs Smyth)

my health is steadily going downhill…I think it

would be beneficial for her to have her own place…

A transition for her…for me…just to let her go (Mrs

Madden)

It’s getting difficult to look after him. I need to go into

hospital and I have difficulty having someone to come

down here to look after him…I usually ask to get out

(of hospital) the same day…. I’ve been in hospital ele-

ven times this year… (Mrs Synnot)

These parents felt that continuing in such as role was no

longer realistic owing to their age and the heavy caregiv-

ing demands and to some their deteriorating physical

and/or mental health.

However, these latter parent carers had no choice but to

continue as there appeared to be no alternative. They had

tried and failed to find suitable accommodation and sup-

port for their loved one but were unable to do so because

of lack of sufficient information, support and accommoda-

tion. These findings are further supported by recent

research which also found that many carers were worried

about the future of their offspring, with increasing anxiety

as they aged and suffered deteriorating health (Bowey &

McGlaughlin 2007). They found that a lack of information

about what would happen should they die or suddenly

become ill further exacerbated these concerns.

Parent carers therefore have various reasons for remain-

ing the primary caregiver for their dependent offspring:

through choice; through lack of trust of others to provide

sufficient care; and through a lack of support, information

and/or awareness of alternative services.



Nearing the end

The subtheme ‘Nearing the end’ describes some parent

carers ‘Being prepared’ for their offspring’s future, while

others spoke of ‘An unforeseen future’ as a result of their

disappointment at trying to be prepared and make plans

for their offspring but being unable to do so because of

the lack of support and information they received:

I don’t know what will happen. No one has told me my

options. I just have to hope for the best (Mrs Godfrey)

In a report by Enable Scotland (2008), all families said

that they worried about the future and what would hap-

pen to their family member when they were not around.

The report also found that older family carers were wor-

ried about the perceived limited options available to them

and their family members, which restricted planning.

For parent carers in this study, the reality that their off-

spring would outlive them was becoming more and more

apparent. Having the appropriate support was important to

how they perceived their future and how well prepared they

were. The original intention of asking parent carers about

the future was to find out about their future. However, these

parents had in a sense given up thinking about themselves

because their priority was their dependent son or daughter.

This was captured under the subtheme ‘No Future’:

…our future is our daughter…we don’t have one (Mr

Quinn)

It’s like I’ve put a hold on my life for him…He’s the

priority in my life and he will and always has come

before me or anybody else. My life is his if you know

what I mean. I’m here to care for him and that’s it

and now I’m at an age where there really isn’t much

to look forward to (Mrs Synnot)

Previous attempts to make plans for their own future

often resulted in failure owing to the demands of caring.

These parent carers were reaching the end stages of their

life and so future plans were not important. Instead, they

appeared content only with the present, thus supporting

previous ‘possible selves’ literature which suggests that

with ageing comes fewer hopes and fears for the future,

and instead, the maintenance of current possible selves is

regarded as more important (Frazier et al. 2000, 2002; Hoo-

ker & Kaus 1992).

Development of the conceptual framework

The conceptual framework (see Fig. 1) developed from the

findings provide some explanation of the experiences,

health and future of older parents caring for offspring

with learning disabilities over a prolonged period of time

and highlights the need for better alternatives for these

parent carers. Most importantly the application of a con-

structivist approach (Rodwell 1998) and the use of

grounded theory (Glaser & Strauss 1967) as a method of

analysis provide some assurance that the findings are

grounded in the experience of the older parent carer. The

conceptual framework has the potential to make a unique

contribution to knowledge for health and social care pro-

fessionals as it may provide some structure for an

increased insight into the experiences of these parent ca-

rers and for future alternatives to better support them in

the present and in the future.

Discussion

A basic driver for the study was to explore the experiences

and future of older parents caring for offspring with learn-

ing disabilities over a prolonged period of time, to inform

health and social care strategies. Participants described a

life which consisted of long hours, demanding caregiving

tasks, and receiving limited support and information from

the outset. Despite the intensity of caregiving, all described

their commitment to caring for their dependent offspring

with learning disabilities. These findings highlight that

older parent carers are an especially needy group.

The findings show that older parent carers lack support,

information and practical resources throughout their care-

giving career, despite policy improvements over the years

to better support their needs. The difference in caregiving

experience between those who received adequate support

and those who received minimal support was startling,

with one parent carer who received formal support many

years later describing it as ‘life changing’. The findings

also highlight that parent carers are often ignored by

health and social care professionals. Furthermore, some

parent carers continue despite their deteriorating mental

and/or physical health as there appears to be no alterna-

tive. This study further explored parent carers’ thoughts

about the future where they described how most of their

thoughts were related to trying to prepare for the future

care of their offspring. Only a few parent carers reported

that they had put plans in place, while most reported that

they had ‘No Future’. When these latter parent carers were

asked to elaborate on why they had ‘no future’ each

expressed that they were at an age where they were sim-

ply at the end stages of their life and had nothing to look

forward to. Those who reported having some sort of plan

for the future were less likely to describe their feelings

about the future so negatively.

Study limitations

A purposive approach was adopted in an attempt to

ensure that a range of experiences and perceptions were

accessed. It is conceivable that those eight carers who


8 D. Cairns et al.

chose to take part in the qualitative study were extreme

cases, either positive or negative. However, the fact that a

wide range of experiences were described suggests that

this potential for bias was not realised. Nevertheless, these

findings cannot be representative of older parent carers of

offspring with learning disabilities. This study also

focused exclusively on older parent carers of offspring

with learning disabilities. Although it was not the aim of

this study, the failure to include the perspective of the off-

spring with learning disabilities (care–recipients) and of

health and social care professionals can in retrospect be

seen as an important omission. The inclusion of care-recip-

ients’ perspectives and those of health and social care pro-

fessionals would have added to this study.

Recommendations for health and social care practice

It is critical that older parent carers who have been caring

over a prolonged period of time are given information,

advice and support as quickly as possible to help them

continue in their caregiving role. This research shows that

parent carers in most cases have a lack of trust in the ser-

vice provision owing to previous negative experiences. It

is therefore vital that health and social care professionals

try to rebuild these levels of trust by signposting parent

carers to sources of advice, as well as ensuring that

assumptions are not made about parent carers knowing all

about their rights and entitlements. Equally they need

strategies to plan to help those parent carers who wish to

cease caring. To achieve the aforementioned, health and

social care professionals in contact with older family carers

will need awareness raising and training. Only by listening

and learning will health and social care professionals gain

the trust of older parent carers and other family carers.

Conclusion

This research suggests that the demanding role faced by

older parent carers is not fully recognised by health and

social care professionals; partnership working is an excep-

tion rather than the norm; parent carers neglect their own

health and needs by prioritising their offspring with learn-

ing disabilities; parent carers are unable to think ahead to

their own future and their own needs; and finally, the

absence of suitable care alternatives to substitute the role

that parent carers are doing prevents carers from moving

on. It is therefore critical that practical services plan for

those who will be caring long term. Information and

advice agencies need to plan for advising parent carers

who are at the end of caring, helping them to plan for the

future of their offspring and also for their own future. The

consequences are too great at an individual and societal

level to ignore. If we do, then a vulnerable group in soci-

ety will continue to be segregated from society.

References

Arksey H., Beresford B., Glendinning C., Greco V. & Sloper T.

(2007) Outcomes for parents with disabled children and carers

of disabled or older adults: Similarities, differences and the

implications for assessment practice. York, Social Policy

Research Unit, University of York.

Bowey L. & McGlaughlin A. (2007) Older carers of adults with a

learning disability confront the future: Issues and preferences in

planning’. Br J Soc Work, 37: 39–54.

Brereton L. & Nolan M.R. (2003) Seeking partnerships between

family and professional carers: stroke as a case in point. In:

Nolan M.R., Lundh U., Grant G., Keady J., editors. Partnerships

in family care: understanding the caregiving career.

Maidenhead, Open University Press: 50–68.

Charmaz K. (2000) Grounded theory: objectivist and constructivist

methods. In: Denzin N., Lincoln Y., editors. Handbook of

qualitative research, 2nd edn. Thousand Oaks, CA, Sage: 509–35.

Charmaz K. (2006) Constructing grounded theory: a practical

guide through qualitative analysis. Thousand Oaks, CA, Sage.

Chou Y.C., Pu C.Y., Kroger T. & Fu L.Y. (2010) Caring,

employment, and quality of life: comparison of employed and

non-employed mothers of adults with intellectual disability. Am

J Intellect Dev Disabil, 115: 406–20.

Dillenburger K. & McKerr L. (2009) “40 years is an awful long

time”: parents caring for adult sons and daughters with

disabilities. Behav Soc Issues, 18: 155–74.

Enable Scotland (2008) Living from day to day: a research project

on older family carers of people with learning disabilities.

Glasgow, Castle Douglas and District Branch and North

Ayrshire Branch, Enable Scotland.

Foundation for People with Learning Disabilities (2005) Shaping

the future together: a strategic planning tool for services

supporting people with learning disabilities. London,

Foundations for People with Learning Disabilities.

Frazier L.D., Hooker K., Johnson P. & Kaus C. (2000) Continuity

and change in possible selves in later life: a 5-year longitudinal

study. Basic Appl Soc Psychol, 22: 237–43.

Frazier L.D., Johnson P.M., Gonzalez G.K. & Kafka C.L. (2002)

Psychosocial influences on possible selves: a comparison of

three cohorts of older adults. Int J Behav Dev, 26: 308–17.

Glaser B.G. & Strauss A.L. (1967) The discovery of grounded

theory: strategies for qualitative research. Chicago, IL, Aldine

Press.

Grant G. & Ramcharan P. (2001) Views and experiences of people

with intellectual disabilities and their families (2). The Family

Perspective. J Appl Res Intellect Disabil, 14: 364–80.

Guba E.G. & Lincoln Y.S. (1989) Fourth generation evaluation.

Newbury Park, CA, Sage Publications.

Hanson H., Nolan J., Magnusson L., Sennemark L., Johansson L.

et al. (2006) COAT: the carers outcome agreement tool: a new

approach to working with family carers. Getting Research into

practice (GRIP) Report No.1. Project Report. Sheffield,

University of Sheffield.

Hooker K. & Kaus C.R. (1992) Possible selves and health

behaviors in later life. J Aging Health, 4: 390–411.

Hubert J. & Hollins S. (2000) Working with elderly carers of

people with learning disabilities and planning for the future.

Adv Psychiat Treat, 6: 41–8.



Johnston L. & Martin M. (2005) Older family carers and learning

disabled adults cared for at home. Their views, experiences and

thoughts on future care. South Lanarkshire, South Lanarkshire

Council, Social Work Resources Adult Services.

Jokinen N.S. & Brown R.I. (2005) Family quality of life from the

perspective of older parents. J Intellect Disabil Res, 49: 789–93.

Jones D.A. & Peters T.J. (1992) Caring for elderly dependents:

effects on the carers’ quality of life. Age Ageing, 21: 421–8.

Kelly B. (2003) Working together to support children who have

intellectual disabilities, and their families. Children’s Issues, 7: 50–

5.

Lincoln Y.S. & Guba E.G. (1985) Naturalistic inquiry. London,

Sage.

MacLellan M., Norris D., MacPherson K. & Flowerdew G. (2002)

Age related transitions: older parents caring for adult sons/

daughters with lifelong disabilities. Halifax, Nova Scotia, Mount

Saint Vincent University.

Maykut P. & Morehouse R. (1994) Beginning qualitative research:

a philosophic and practical guide. London, Falmer Press.

Nolan M., Grant G. & Keady J. (1996) Understanding family care.

Buckingham, Open University Press.

Nolan M.R., Hanson E., Magnusson L. & Andersson B.A. (2003)

Gauging quality in constructivist research. The Aldre Vast

Sjuharad model revisited. Qual Ageing, 4: 22–7.

Pinquart M. & Sorensen S. (2003) Differences between caregivers

and noncaregivers in psychological health and physical health:

a meta-analysis. Psychiatry Aging, 18: 248–56.

Ramcharan P. & Grant G. (2002) Views and experiences of people

with intellectual disabilities and their families (1). The user

perspective. J Appl Res Intellect Disabil, 14: 348–64.

Roberto K.A. (1993) Family caregivers of ageing adults with

disabilities: a review of the caregiving literature. In: Roberto K.

A., editor. The elderly caregiver: caring for adults with

developmental disabilities. Newbury Park, CA, Sage: 3–18.

Rodwell M. (1998) Social work constructivist research. New York,

NY, Garland.

Scorgie K. & Sobsey D. (2000) Transformational outcomes

associated with parenting children who have disabilities. Ment

Retard, 38: 195–206.

Todd S. & Jones S. (2003) ‘Mum’s the word!’: maternal accounts

of dealing with the professional world. J Appl Res Intellect

Disabil, 16: 229–44.

Todd S. & Shearn J. (1996) Time and the person: the impact of

support services on the lives of parents of adults with learning

disabilities. J Appl Res Intellect Disabil, 9: 40–60.

Weeks L.E., Nilsson T., Bryanton O. & Kozma A. (2009) Current

and future concerns of older parents of sons and daughters

with intellectual disabilities. J Policy Pract Intellect Disabil, 6:

180–8.

White N. & Hastings R.P. (2004) Social and professional support

for parents of adolescents with severe intellectual disabilities.

J Appl Res Intellect Disabil, 17: 181–90.


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