The Close Relationships of People with Intellectual Disabilities: a Qualitative Study

THE CLOSE RELATIONSHIPS OF PEOPLE WITH INTELLECTUAL DISABILITIES: A QUALITATIVE STUDY

Faye Sullivan

Keith Bowden

Karen McKenzie

Ethel Quayle

Background

Positive interpersonal relationships have been found to enhance an individual’s quality of life. However, people with intellectual disabilities (PWID) often have restricted social networks, and little is known about their views on close social relationships. Thestudy aimed to explore how this group perceives and experiences close relationships.

Materials and Methods

Ten (6=men 4=women) PWID participated. Data were collected using semi-structured interviews, and analysed using interpretive phenomenological analysis.

Results

The results report on three of five themes drawn from a larger qualitative study: ‘Relationships feeling safe and being useful’; ‘Who’s in charge?’ and ‘Struggling for an ordinary life’.

Conclusions

Close relationships are valued and desired by PWID, but a variety of barriers inhibit their development and maintenance. This includes the failure of others to value, accept and appropriately support the independence and relationships of PWID. Potential ways of addressing these issues are discussed.

Keywords:

experiences, intellectual disability, interpretivephenomenological analysis, qualitative, relationships

INTRODUCTION

The interpersonal relationships of an individual are considered to be an indicator of their quality of life (Cummins & Lau 2003; Power et al. 2010). Further, social networks and the support that relationships provide have been proposed to be a protective barrier against physical and mental health problems (Newton et al. 1994; Heiman 2001), as well as acting to increase and sustain the self-esteem and confidence of people with intellectual disabilities (PWID; Srivastava 2001). Social networks typically evolve in the context of family, work, education and community (Forrester-Jones & Grant 1997) and provide an individual with opportunities to develop a variety of different relationships. It has been well documented that the social networks of PWID are often more restricted than those of the general population (Wiener & Schneider 2002; Pockney 2006), leaving these individuals socially isolated (Department of Health 2001a; Lafferty 2008). There are a variety of explanations offered for this. As

PWID often do not work or contact is restricted to the work setting, social relationships are commonly not formed (OhtakeChadsey 1999). Likewise, a lack of supportive attitudes, limited opportunities, transport and resources (Brackenridge & McKenzie 2005; Lafferty 2008) may restrict the development of relationships. PWID are also less likely to experience a parent – child relationship as they are often discouraged from having children and may consider that parenthood is not a realistic option for them (Atkinson & Williams 1990; McCarthy 1999). Living situation also influences the relationships PWID develop: those living with parents have been found to have smaller, predominantly family based social networks, whereas those living in community homes were more reliant on paid carers

(Krauss et al. 1992). While many PWID value relationships with carers, these feelings are not always reciprocated, which may lead to difficulties for both parties (Pockney 2006).

It is clear that a wide variety of factors influence the social contact and relationships that PWID experience. There is debate surrounding the underlying cause of relationship difficulties encountered by this population. Some authors identify internal factors, such as social skills (Wiener & Schneider 2002), communication and emotional literacy difficulties (Brackenridge & McKenzie

2005). When considered in isolation, these hold the individual and the difficulties they encounter solely responsible for their limited experience of relationships (Pockney 2006). Other authors emphasize external factors which are founded in a societal ‘lack of acceptance’ (Mills 1998) and failure to effectively facilitate the presence and participation of PWID in the community (Pockney 2006).

Attempts have been made to address both internal and external factors, in the hope of promoting better relationships for PWID, for example through the promotion of social, communication and emotional literacy skills (Carr et al.

2007). External factors have also been targeted in the context of policy recommendations and initiatives to promote the social inclusion of PWID and their human rights (Scottish Executive 2000a; Department of Health (DOH) 2001a, 2009a). This includes providing guidance on what good services should offer in terms of promoting the social relationships of the PWID they support (DOH 2001a) and funded projects which aim to increase the safety of public spaces for PWID (Scottish Government 2013).

However, social skills training has not been found to have a significant impact upon the social competence or relationships of PWID (Moore 2005; Gresham

et al. 2011), and despite initiatives to promote social inclusion, many PWID continue to live socially isolated lives (Wilson 2007; Lafferty 2008). One reason for this limited success may be that historically, the relationships of PWID were most commonly considered by those other than PWID themselves (Wilson 2007). More recently however, there has been a steady growth in, and promotion of, self- advocacy (Sanderson 1995; McCarthy 1999), and service user involvement (Scottish Executive 2000b, 2001; Department of Health 2001a,b). A growing body of qualitative research has been conducted with PWID examining their experiences of friendships (Nunkoosing & John 1997; Knox & Hickson 2001; Brackenridge & McKenzie 2005; Mason et al. 2013), going beyond friendship (Lafferty 2008), sexual relationships (Johnson et al. 2002; Lesseliers & Van Hove 2002; Wheeler 2007), parenting (Shewan et al. 2012) and loneliness (McVilly et al. 2006).

The most recent qualitative research in relation to friendships and close relationships in adults with intellectual disabilities has indicated that the participants generally view social relationships in the same way as those without intellectual disabilities. Close relationships are described in terms of the psychological and functional benefits they bring, such as companionship, feeling valued (e.g. Lafferty et al. 2013; Mason et al. 2013) and having someone who can provide practical support and other concrete benefits, such as alerting staff when an individual is unwell (e.g. Brackenridge & McKenzie 2005; Lafferty et al. 2013).

Research has also indicated the importance of staff members in facilitating or creating barriers to socialrelationships (e.g. Masonet al.2013). In this context,close relationships can play a role in increasing the independence of the individuals, for example by havingsomeone to accompany them to new places, and havebeen interpreted as a means of reducing the restrictedand supervised nature of social activities that manyPWID often face (Lafferty et al. 2013). There is also arecognition of the more challenging aspects offriendships, such as negotiating disagreements and theneed to be alert to being exploited by others (Laffertyet al.2013; Masonet al.2013).

This research begins to enable the voices and opinions of PWID to be heard and promoted and to influencepractice and policy. As Wilson (2007) notes, however,the majority of the research in this area highlights the continuing power that ‘parents, carers, service providersand health professionals haveto enable or constrainthe development of relationships’ (p. 22). This highlights the importance of continuing research which promotesthe views of PWID about how they wish to conducttheir social relationships.This study aimed to build on the existing qualitativeresearch by addressing the gap in the literatureregarding the experience and perceptions of PWIDabout close relationships.

METHOD

Design

A qualitative method using interpretative phenomenological analysis (IPA; Smith Osbourne 2003; SmithEatough 2007; Smithet al.2009) was chosen as it is‘concerned with experiences which [are] of particular significance to the person’ (Smithet al.2009, p. 33),while also acknowledging other influential areas including social norms and practices and historical andcultural aspects (Eatough & Smith 2006). Factors thatalso contributed to its selection were the transparency ofthe researcher’s context and the interpretativecomponent within the analysis process.

Sample and setting

Participants were recruited within central Scotland through People First Scotland (PFS), a nationwideadvocacy organization for individuals with intellectualdisabilities. This method was chosen as it was feltthat members would be more confident sharing theirexperiences and opinions with a professional and bebetter placed to make decisions about consent (Nind2008). PFS Development Workers issued an invitationto potential participants, who then self-elected to takepart in the study. A purposive sampling method wasadopted to recruit participants, as IPA calls forsample homogeneity. Inclusion criteria specified thatparticipants were adults (aged 18 and older), whowere willing to be independently interviewed andconsidered themselves to have intellectual disabilities,indicated by membership of PFS. Participants wererequired to have sufficient expressive languageabilities to allow them to take part in the interviewprocess, speak English as their first language and beable to provide informed consent. Participants wererequired to live in the community, and individualsliving in large group accommodation were excluded,which was performed to enhance the homogeneity ofthe sample. As such, participants were required toreside with no more than three other adults. Thosewho were currently experiencing severe mental healthdifficulties or who were involved in adult supportand protection procedures or other proceedingsrelated to relationships or sexual activity were alsoexcluded.

An accessible document outlining the research project and procedure was provided to participants andpresented by the PFS Development Worker andresearcher, prior to interview and gaining writtenconsent. This was performed to ensure that participantsunderstood what participation would entail. Asmembers of PFS choose to be referred to as having‘learning difficulties’, this was reflected in thisdocument.

Participants

Ten (six female, four male) white Scottish participants were recruited, with ages ranging between 31 and60 years old. Social circumstances varied acrossparticipants with three individuals living independentlyand seven living within a family home. None of theparticipants were married or lived with partners. Eightparticipants attended day centre services. One of theparticipants was employed, one had been employed inthe past, and three were engaged in voluntary work atthe time of interview.

Research context

The research project was undertaken as part of a ClinicalPsychology Doctorate by the first author who hadconsiderable experience of working with PWID and theirfamilies/carers. Her clinical work was predominantly influenced by systemic practice and theoreticalunderstanding, as well as community psychology.

Data collection

Participants selected the time and place of interviews. Venues included day centres (n=7), homes (n=2), PFSpremises (n=1) and a local community venue (n=1).Semi-structured interviews were conducted, facilitatedby an interview schedule that was developed prior tointerview and in keeping with IPA methodology. Openquestions were used alongside prompts, as PWIDcommonly find open questions problematic (McCarthy1999). Questions focused upon an individual’sexperience of close relationships, what they meant to the participant and what they valued in theserelationships. Interviews were recorded digitally andtranscribed verbatim, with interview length averaging53 min.

Data analysis

The first author analysed transcripts using the six-stage analytic procedure outlined by Smithet al.(2009). Inthis process, the researcher is initially required tobecome immersed in the data by listening to audiorecording of the interview and repeatedly reading thetranscripts, and after which, initial notes are madewhich highlight the context and language of accounts aswell as any conceptual or contextual elements. Throughthe exploration of patterns across the original data andinitial notes, themes are identified. Connections acrossthese themes are then explored to producesuperordinate themes. This process is repeated for eachtranscript, enabling the construction of new themes,without, as far as possible, being influenced by previousfindings. Finally, the superordinate themes from alltranscripts are examined to identify recurrent andisolated themes. A constant iterative process facilitates the movement from individual to overarching themes,which, through integration, leads to the development ofsubordinate themes that represent the cohort as awhole. At this stage, the process of analysis and theinterpretation of data were also supported by theresearch team, who met to discuss and reflect onthe prominent themes and patterns identified. A table ofsuperordinate themes, and the subthemes containedwithin these was then produced, which represented thewhole participant group. Finally, the re-reading oftranscripts and selection of extracts to illustrate eachtheme in the results section further enhanced themevalidity and concluded the analysis process. Althoughexploring the meaning of the experiences forparticipants is key in IPA, the researcher is alsorequired to interpretively engage with the data (Smith1996). The use of a reflective diary and supervisionduring data collection and analysis facilitated thisprocess.

Validity

Validation of the analysis process and themes took place as all stages were overseen by the second author,facilitating reflection and discussion regarding thedevelopment of themes. Feedback was also sought fromall of the participants who took part in the project. Sevenagreed to meet with the researcher, who presentedthe findings of the research using an accessibledocument. This was performed to enhance participants’understanding and in turn their ability to providefeedback regarding the research findings. All reportedgeneral agreement with the research findings, with oneexception regarding the re-labelling of one of the themes.The original label was not found to be an accessiblephrase for participants and was subsequently changed toa title suggested by one of the participants. The analysiswas also critically reviewed using Smith’s (2011)guidelines on assessing the quality of IPA research.

Ethical considerations

The research project was reviewed and approved by PFS’s Chairs Committee and independently reviewedby The University of Edinburgh according to theguidelines of the School of Health Research EthicsCommittee, the ethics committee of the first author atthe time of the study. The use of an accessibleinformation booklet addressed a number of ethicalissues, such as outlining the researcher role,confidentiality procedures and when these might bebroken, alongside what would occur if participantsexperienced distress. It also highlighted thatparticipation was voluntary and that an individualcould choose not to answer questions or withdraw fromthe project at any time.

RESULTS

Five superordinate themes were identified: ‘Relationships feeling safe and being useful’; ‘Who’s incharge?’; ‘Struggling for an ordinary life’; ‘Hiddenfeelings’; and ‘Touching people in relationships’. Thisarticle describes and explores the first three themes. Thesource of extracts is indicated by participants’pseudonyms. To maintain confidentiality, all identifiableinformation has been changed. Where extracts have beenedited, ellipses (...) indicate omitted material and [ ]indicates additional information added by the researcher.

Relationships feeling safe and being useful

This theme was found to be central to what people hoped for in close relationships and was evident in nineinterviews. It comprised two subordinate themes:‘Relationships feeling safe’ and ‘Relationships being

useful’.

Relationships feeling safe

The importance of feeling safe in relationships was a dominant theme for eight and present in nine of theinterviews. It was evident in comments concerning safety,stability, reliability and trust. Participants conveyed theimportance of stability and reliability in a variety ofdifferent ways, including staying in regular contact:

‘we’re close friends all the time, me and Kirsty. Like she’ll phone me or I’ll phone her, if I needanything’ (Lesley) and consistently being there forsomeone: ‘Close relationships, um, um. I would say,um, you stick to somebody that you, you, you, youreally really love’. (John).

Although consistency was integral to the close relationships of some participants, others found thatrelationships could be inconsistent yet continue to beexperienced as safe and reliable:

And alright there is days that, she’s got her gooddays, there is days she’s told me to get lost, andI’ve told her to get lost. But see within the nextcouple of days we would make up again (...) andthat’s partly what it’s all about. (Ben)

Conversely, the potential loss of a stable other, typically a parent, was described by three participants.The area evoked strong feelings of powerlessness andanxiety, demonstrating the key roles that others play increating and maintaining stability in their lives.

I don’t know how it would work if anything happened to my father. I’ve got my father asbackup for now, but the only thing is if anythinghappened to my father I would actually have to getsome people in because, I could cope to a certain

extent. (Ben)

I ken, I mean if my mum’s wasn’t there, what’sgoing to happen to me? [inaudible] (...) I mean,she’s there the now, but probably, I know, you ken

the [pause], you know what I ken?(Oliver,Scottish

word meaning to know, understand or mean).

The presence of trust was also considered to be indicative of a positive relationship. In contrast, theabsence of trust was described as limiting the safety anddepth of relationships.

it’s so wonderful you can trust that person, and that, that person would never hurt your feelings or,I’m sure to God, I know. (Jane)

Keith: I think because Debbie was a bit, what’s theword I’m looking for? Um [tut], no said, um, it’show she kind of twisted things (...) So I said rightwell, um, I’m not going to be doing that [inaudible][laugh] But

Int.: So it sounds like you decided to end thatrelationship?

Keith:Yeah.

Relationships being useful

This was discussed by nine participants and was a dominant theme for six. The importance of the functionalrole that relationships served was highlighted and tendedto relate to practical gains as well as doing things withothers. This was clearly illustrated by Keith for whomrelationships were classified as ‘what the person iswanting to get out of the relationship’. Interestingly, hedescribes this process as being one way. The presence ofthis imbalance was supported by the reports of otherparticipants, who focused upon the importance ofpersonal gains in relationships when asked what the mostpositive things about their relationships were:

he makes me a cup of tea sometimes(Chloe)

she helps me out a lot and she, when I got this place they all mucked in for [pause]. Did the houseup.(Lesley)

Another important element of close relationships was sharing activities:

Tim:Well we’re going, we’re going to see some,some classes with her (...) like Tae Chi (...) BumTums, Action for People (...) and we go to, um, like, um, we go to the market and that (...)

Int.: How do you know that your relationship withAlice is a close one?

Tim: I don’t know. I think because of the classeswe, we [stutter] joined up to.

Some of the participants defined closeness in terms of the way the relationship helped facilitate access todifferent activities and environments: