Increased choice and control is a driving force of current disability policy in Australia for people with disability and their families. Yet little is known of how adults with intellectual disability (ID) actually experience choice and control within their family relationships. We used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making. Three themes were identified: (1) centrality of family, (2) experience of self-determination, and (3) limitations to choice and control. The participants identified trusted family members from whom guidance around choice and decision making was both sought and received, often involving mutual decision making and limitations to control.
Increased choice and control for people with disabilities and their families is frequently promoted in many countries as a key objective of disability policy. These policies are based on the United Nation's Convention on the Rights of Persons with Disabilities (UNCRPD), with Article 3 of this convention upholding “individual autonomy including the freedom to make one's own choices, and independence of persons” (United Nations, 2006). In Australia, the National Disability Insurance Scheme (NDIS) promises person-centered, individualized funding based on the support required to reach individual goals and aspirations. A premise of the NDIS is that the person with disability will have the opportunity to exercise choice and control, with recognition given to the vital supporting role of family (National Disability Insurance Scheme, 2013).
The importance of family in the lives of adults with intellectual disability (ID) has been recognized, as a source of happiness, and of care and support (Haigh et al., 2013; Widmer, Kempf-Constantin, Robert-Tissot, Lanzi, & Carminati, 2008). When the issue of choice and control is considered, families report an in-depth knowledge of the person (Hillman et al., 2012), and believe they are able to guide effective decision making by the individual (Saaltink, MacKinnon, Owen, & Tardif-Williams, 2012). Some people with ID report, however, that rather than supporting decision making, parents can be over-protective and create barriers to self-determination (Haigh et al., 2013; Jahoda & Markova, 2004; Shogren & Broussard, 2011). In contrast, families identified barriers to self-determination as being primarily attributable to characteristics of the family member with ID such as, increased vulnerability due to limited decision-making capacity, skill gaps, or inability to fully understand consequences (Mitchell, 2012; Murphy, Clegg, & Almack, 2011; Power, 2008; Saaltink et al., 2012; van Hooren, Widdershoven, van der Bruggen, van den Borne, & Curfs, 2005). Families also reported a sense of responsibility to protect their family member (Mitchell, 2012; Saaltink et al., 2012). These different perspectives reveal an ongoing challenge in balancing the rights of the individual with the concerns of family, with family support provided on a continuum from proactive empowerment to fear-based protection (Curryer, Stancliffe, & Dew, 2015).
Self-determination has been defined as “acting as the primary causal agent in one's life…free from undue external influence or interference” (Wehmeyer, 2003, p. 177). Putting this complex concept into practice requires appropriate skills, knowledge, and attitudes (Abery & Stancliffe, 2003). Choice-making, decision-making, and problem-solving skills, together with an awareness of self and the ability to self-advocate have been identified as important components of self-determination. Developing these skills requires opportunities and support, and they are greatly influenced by environment and experience (Wehmeyer, 2003). For people who have had little control over their life, choice making provides a step towards self-direction, even if ongoing support and shared decision making is required (Nonnemacher & Bambara, 2011).
The tripartite ecological theory of self-determination (Abery & Stancliffe, 2003) offers a framework to understand the experience of choice and control of adults with ID within their family. According to this theory, self-determination means an individual has the level of control wanted, in those areas of life he or she considers important. The framework recognizes that people may voluntarily cede or share control in certain areas of their life and still retain their self-determination. This commonly occurs when an individual considers an issue is unimportant, or if they believe they lack the skills required to make certain decisions unaided and therefore prefer someone with more expertise to decide or to offer advice/support. Consultation and acceptance of medical or legal advice is an example of this in practice.
Self-determination is generally exercised within the context of relationships (Wehmeyer & Abery, 2013) and appropriate support, particularly by someone who knows the person well, can help overcome limited self-determination competencies (Stancliffe & Abery, 2003). There is little research about how families actually support the exercise of self-determination of adults with ID (Wehmeyer, 2014). Most studies have focused on school or community settings rather than the family (Chambers et al., 2007). Available research on families has primarily reflected the perspective of parents (Foley, 2013; Mitchell, 2012). There is a need to understand the views and experiences of individuals with ID themselves (Grant & Ramcharan, 2001; Shogren & Broussard, 2011).
The aim of this study is to explore the support for choice and control provided by family from the perspective of adults with ID. The terms choice making, decision making, control, and self-determination, although sharing some common characteristics and often used interchangeably, have distinct meanings. For the purpose of this article, choice making will be referred to as the process of identifying preference. Decision making will be treated as the process of identifying options, considering consequences and ultimately making a choice. Control will refer to the power to make the final decision. Self-determination, as discussed earlier, is a complex concept, of which choice, decision making, and control are a part. The lived experiences of the participants will be examined using the theoretical framework of the tripartite ecological theory of self-determination (Abery & Stancliffe, 2003).
The qualitative methodological approach of interpretative phenomenological analysis (IPA) was chosen to explore and understand participants' lived experience. This approach allows the researchers to focus on the experience of each individual, to make sense of how they make sense of their experiences (Smith, Flowers, & Larkin, 2009). Previous use of IPA as a methodology for research with people with ID includes exploring participants' experience of diabetes (Dysch, Chung, & Fox, 2011), and of postnatal support (Wilson, McKenzie, Quayle, & Murray, 2013).
Ethics approval was received from the University of Sydney (Project no. 2013/1047). Participants received information about the study both verbally and in printed easy-English format. All participants gave written consent. Participant confidentiality was maintained with personal information de-identified.
Participants and Recruitment
Participants were recruited through self-identification following promotion of the study at a disability conference, and via referrals from advocacy agencies and a disability employment service. The criteria for inclusion were that the participants be adult (18 years and over) and able to give informed consent. Participants with ID with mild to moderate levels of impairment were purposively chosen to ensure active participation in individual interviews. All participants lived in the same Australian city. The number of participants was limited to eight, in line with the idiographic principle of IPA (Smith et al., 2009). A small number of participants allows the researcher to become very familiar with all the data, focusing on the experience of each individual and encouraging “a richer depth of analysis” (Pringle, Drummond, McLafferty, & Hendry, 2011, p. 21) while still making possible an analysis of convergence and difference. We chose participants living independently from family as well as those still in the family home, to provide insight about the influence of different living situations on the experience of choice and control. Participant characteristics are summarized in Table 1.
A participant background information form and a semistructured interview guide, both available from the corresponding author, were used to guide data collection. The background information form was used to record participant demographic information such as age, self-reported disability, where and with whom the person lived, where they worked, and their independent living skills.
The interview guide was developed by the authors with a focus on exploring the participants' experiences of goal setting, choice and decision making, problem solving, and speaking up. The guide also addressed accessing family support, perception of level of control in life, and questions about family relationships. Questions were asked in a flexible manner to allow each individual to tell his or her story in their own way, recognizing differing capacities. An example of an interview question is: “Describe a time when you have had to make a choice or decision for yourself.” Possible supporting questions to encourage discussion included: “Who gave you support to do this?,” ”How did they support you?,” and “How did you feel when receiving this support?”
Semistructured interviews were used, with each participant interviewed twice. Each interview lasted an average of 38 minutes. Interviews were conducted in a place of the participant's choosing. Two participants chose their home whereas the other six chose a private space within a public setting. One participant had his mother present for the initial introduction; she left the room during the interview. No other participant had, or requested, a support person to be present. With the written permission of the participant, all interviews were audio recorded. The first author conducted all interviews and wrote field notes during and immediately after the interviews to contextualize the participants' responses (Bryman, 2001) and thereby enhance the understanding and interpretation of each participant's experience.
At the start of the first interview with each participant, demographic information was collected using the background information form. Responses to these questions provided an opportunity for increased understanding of the context of each participant's family relationships and allowed the participant to relax and develop a sense of trust and rapport with the interviewer, important for rich data collection (Smith et al., 2009).
The second interview was informed by data gathered at first interview, allowing the interviewer to check the participant's experiences, clarify and expand upon issues previously discussed, and to overcome any obstacles to data collection. For example, after reflecting on the limited responses made by one participant, we identified a need to ask him more concrete questions thus helping him to focus on his own experience. All data was transcribed verbatim and de-identified.
Data analysis was conducted in accordance with IPA methodology as described by Smith et al. (2009). Each transcript was read as a whole, with initial noting of interesting comments. The transcript was then reviewed, line by line, and exploratory comments added. Subordinate themes were identified, first from within and then between each transcript. Connections among these themes were recognized and superordinate themes created. The authors then attempted to make sense of these meanings, drawing on their own experience and expertise. This double hermeneutic feature of IPA results in an analysis that recognizes the input of both the participants and researchers, resulting in a “joint product of the participant and the analyst” (Smith et al., 2009, p. 80).
As an example of this process, six of the eight participants spoke about family experiences that produced stress. The subordinate theme of “stress and conflict” was placed under the superordinate theme of “centrality of family,” which also included two other emerging themes “natural life-long tie” and “a place of care and inclusion.” It is only through an understanding of all three subordinate themes that the superordinate theme around the complexity of the family experience can be understood. The experience of “stress and conflict” within family relationships was congruent with the first author's observation and experience of tension within families that include a person with ID.
Quality and Trustworthiness
Following the principles of IPA, this study maintained a transparent, auditable trail of information, as recommended by Larkin and Thompson (2011) and Smith (2011). The audit trail included documentation of transcripts with initial notes and coding, a record of participant quotes relevant to the research question, the grouping of these into subordinate themes and subsequent superordinate themes. All authors viewed and discussed the analysis documentation, the first, third, and fourth authors were also involved in identifying subordinate themes and integrating these into superordinate themes. In keeping with IPA recommendations for rigor (Smith, 2011), each subordinate theme included evidence from at least half of the participants. Due to the interpretative nature of IPA, member-checking of the analysis is not considered the most appropriate validation strategy for this methodology (Larkin & Thompson, 2011). However, to check that the description of experiences was being heard and understood correctly, a brief overview of the content of the first interview was given verbally at the start of each participant's second interview. No participant voiced any concern about the description of their experience. The experiences described in both interviews were consistent.
To understand the meaning that the participants give to their experiences, the background information sheet, field notes, and general information provided during the interviews were analyzed. Each participant's experience of family support was examined around day-to-day activities, as well as choice and decision making. Table 2 provides a summary of these findings. This table, in which the participants are arranged according to the level of family involvement in day-to-day activities, shows the different experiences of the participants. It shows that the participants with high level of family involvement in day-to-day activities (group 1) also experienced family involvement in the identification of life choices, mutual or family led decision making and limitations to choice and control. Those with a moderate level of family involvement in day-to-day activities (group 2) generally led their own decision making with family viewed as advice givers who did not limit choices. Those participants with low level of family involvement in day-to-day activities (group 3) generally made their own decisions with little involvement of family and only on request. It is also notable that the four participants with high family involvement lived with or near family and reported generally positive family relationships (Table 2, group1). Proximity and relationships may also be associated with choice and control, although as shown in Table 2 (e.g., Cameron and Stacey, group 2) these factors were not as consistently related to choice and control as was family involvement in day-to-day activities. The reasons for the different level of family involvement in day-to-day activities were not a specific focus of this study, but may be related to family perception of the level of support required around choice and decision making.
Data analysis identified three superordinate themes: (1) centrality of family, (2) experience of self-determination, and (3) experience of limits to choice and control. These superordinate themes emerged from eight subordinate themes (see Table 3). Each theme is explained by the use of direct quotations from participants, with an exploration and interpretation of the meaning these experiences had for participants. As previously noted, subordinate themes were included if supported by evidence from at least half of the participants. However, in the interests of succinct presentation, each subordinate theme is not necessarily accompanied by quotes from four different participants, as this would be unnecessarily repetitive.
Superordinate Theme 1—Centrality of Family
Three subordinate themes, focused on the participants' experience of family, informed the first superordinate theme “centrality of family.” The meaning that the participants gave to their experience of family was predominantly one of belonging, originating from a belief in a natural tie between themselves and family members. This tie was further strengthened by their experience of care and inclusion within the family. However, conflict and stress with certain family members meant that not all family relationships were viewed in a positive light.
(a) Natural, life-long tie
Participants perceived family as a natural connection, something family members had little control over. The love and concern of parents was explained by Cameron as “one of those genes you have.” This view was supported by Rosa who accepted without question that her family was special and important because they were the “same flesh and blood.” Natural connection was expressed by participants irrespective of the quality and level of family support they experienced. Shared childhood experiences were seen as enhancing this natural bond and created a relationship which was different to others.
Families are supportive, families you've known for years, you've had them since you were born … and you've got to know them and they're really close to you. Whilst anyone outside of that…they're not really people that have been in your life from when you were a child. [Stacey]
Natural connections resulted in a relationship that overcame day-to-day problems. Tara explained, “We [referring to her mother] have our fights but if anybody goes against her I'll just…clobber them.” Thomas stated, “At times when we might argue, disagree to a few things, doesn't mean I don't love her…I've always got her back.” Family relationships were viewed as being of primary importance, an obligation for all the family. “As the saying goes, family first…your family always has to come first.” [Cameron]
(b) A place of care and inclusion
As well as recognizing the natural bond between family members, participants perceived family as a source of care and inclusion. They recognized this support as beginning in childhood and continuing into adulthood. Helen stated, “My parents did a lot of caring and they supported me and everything and they still are supporting me.” It was expected that such supportive family relationships, initiated by parents, would be continued by other family members. “I have extended family that can look after me so that's what we have in mind, that when mum and dad aren't around we have people that can support us.” [Helen]
Family as a place of care was particularly important in difficult times. Tara, although having moved out of the family home for many years, still felt able to go back when she needed extra support. This sense of the family home as refuge was illustrated when Tara became sick and she happily accepted her mother's suggestion to “just come home.” Expressions of concern were viewed as a sign of caring. Cameron explained that although his mother worried about him going out with his friends, he felt that “She doesn't stop me, it's just saying like ‘be careful' and I always am.”
Participants felt a sense of equality within their families. Many, such as Tara, spoke of being treated the same as their siblings, “My mum treats all three of us as the same … we are all equal.”
Family relationships were valued and based on respect and reciprocity. Helen stated, “I see my parents like friends…I treat them the same way they treat me,” whereas Stewart noted “We help one another.” Care was often shown through practical examples of helping. Fixing his father's bathroom gave Sam a sense of achievement and satisfaction, “It's something I can do. I feel good.” Care was also provided on an emotional level. Thomas spoke about concern for his mother and expressed his sense of protectiveness towards her, “Well she's my Mum and she needs someone on her side.”
(c) Conflict and stress
Family relationships were often complex, difficult to navigate, and at times negative. Although a certain level of disagreement within families was seen as part of family life, some participants experienced ongoing conflict or estrangement with specific family members. Cameron described the lack of contact with some members of his family, “My Dad, I don't talk to him, I hardly talk to my sisters or my other half-brother.” Thomas also talked about conflict and tension in his relationship with his father, “I love him very much but there's some bad, some things…and he would lecture me on things…well I just ignored it because I know he's got a bad temper.” For both Cameron and Thomas, whose parents were separated, the relationship with their fathers was described as not positive. In contrast, their relationship with their mothers, who they identified as their main source of family support, was generally positive and any conflicts were resolved quickly (see Table 2).
Rosa, who described her family as “broken,” explained that she no longer has contact with her mother, and this was in part due to conflict between her mother and the extended family. She felt pressure to “get on” with her extended family who she lives near. “Because I have to share my life with them sometimes and be in a room with them…I expect to get on with them.” This, and other experiences of conflict, resulted in her making the decision to get support around decision making from her brother rather than either parent. Sam also spoke about stressful incidents within his family, “It's not easy…I don't know how many years I've been doing this but I don't really like it.” His past experiences led him to be discerning about who in his family he can really trust. “Oh, it's like—trust Mum, don't trust Dad…Dad had taken money from me in the past and still will.” For both Rosa and Sam, the more pervasive and enduring nature of these family conflicts resulted in their family relationships being characterized in Table 2 as mostly “problematic.”
Sharing the family home as an adult created conflicting feelings for Stacey. She described disagreements with family members over house rules. “I get really upset with them…they don't realize that even though it's not my house and my rules, I've also got rules of what I won't tolerate.” However, she was fearful of moving out of the family home into her own home and this was also a source of stress for her. “It makes me feel really sad…I feel like I'd be really lonely…I feel like they're trying to push me away, they're not wanting me to be there, they're not loving me.”
Conflict with family members was at times difficult for the participants to cope with and for some, resulted in learning new ways to respond. For Thomas, the experience of anger led him to seek counselling to enable him to have greater control over his emotions, “I don't want to hurt anyone's feelings anymore, that's why I had…counselling. So now I'm in control, I'm over it.” Feeling overwhelmed by the family resulted in Tara needing to learn coping mechanisms “Sometimes I just get so worked up, I go in the lounge room and I just have to sit there and take time out cause there's too many people in their place.” These skills assisted in the maintenance of positive family relationships as described in Table 2.
The participants' description of their family and the interactions experienced showed complex and varied family relationships. All participants held onto a vision of family as important and irrespective of the type and quality of family relationships, family remained central to their view of life as an adult.
Superordinate Theme 2—Experiences of Self-Determination
Just as the experience of family varied between participants, so too did their experience of self-determination. The subordinate themes of learning through experiences, increased choice-making opportunities, and understanding self and feeling in control, created the superordinate theme of “experiences of self-determination.”
(d) Learning through experiences
Participants described how they learned, through experience, to do and to decide things for themselves. They recognized the importance of doing as much as they could and this seemed to give them a sense of achievement. As explained by Cameron, “My mum helps me with a lot of things, but mostly I try and do stuff by myself, like if you don't do it yourself you won't learn.” Others were aware that learning can be from direct personal experience or through observation of others. Stacey explained, “Most decisions are pretty easy, if I've seen it or experienced it myself and seen it in other ways then it's ah, it's easy. But if I hadn't seen it myself it would have been a big decision to make.”
Families were seen as role models, both positive and negative, by many participants. Thomas recognized that his brother's example gave him confidence to move out of home. “I feel like I can do it [move out of home]! I'm doing it, I know what to do. Like my brother does it, so if he can do it so can I.” Lessons were also learned from poor family role models. Cameron, who has little contact with his father, spoke of wanting to be a father one day but noting that “I will be a better father than my old man was.”
Family support for learning decision-making skills was recognized by Tara. Family not only encouraged her to try to reach her goals, but also gave her practical assistance in strategies to assist decision making. “Mum and dad are pretty good…They will say ‘write the negatives and the positives down.'”
(e) Increased choice-making opportunities
Participants reported feeling that their level of choice and control was increasing over time. There was an acknowledgement that families, particularly parents, were less controlling as participants got older. Being able to do things, without the need for parental permission, was a practical example of the development of self-determined behavior. This experience was reflected by Stacey. “As I grew older then I started to feel like now I can do things I couldn't do before. I can catch up with friends without my [family]…giving the permission.” Helen explained that as her parents saw evidence that she was able to do things for herself, able to cope with more responsibility, they partially relaxed their control. “Now that they have seen me, that I am able to do things for myself, they let go a bit…they know that I'm old enough…to do things for myself, well not everything.” This relaxation of parental control was encouraged by siblings, with Helen's brother challenging their parents' actions. “My brother noticed that my parents were overprotecting me a lot so my brother just stood up for me and said 'Stop treating her like a little child, she's old enough to make her decisions.'”
Participants felt a sense of pride that they were able to take on more adult responsibilities and they wanted their family to recognize and share this pride. There remained a need to prove they could successfully take control of their life, as described by Thomas, “Mum's always done those things for me…and I loved that…but since I'm like my brother…I want to be independent…I will show her how good I am, that I can do it all myself.”
(f) Understanding self and feeling in control
Self-awareness and the confidence to speak up were important to participants, giving them a sense of themselves and the ability to have control in their life. Over time, Tara was less inclined to take notice of what others thought of her, “I think when I see people; sometimes they're too quick to judge people. But now, I sort of said,' If they don't like me that's their problem.'” Similarly, Cameron had a strong sense of self-awareness, “I would always be myself. Always have your own say. You've got your own decisions, what you want to do in your life.”
Through speaking up for herself, Helen was able to demonstrate her ability to take a greater level of control over her life. “I think it has helped me in both my family and the community…because they can see that I can speak up for myself, I don't always have to have someone talking on my behalf.” The ability and confidence to speak up, together with being listened to, was recognized as an important aspect of mutual decision making. Stacey explained “I think she'll [family member] listen to me, she'll put her views…and I think we will be able to work out a good arrangement.”
Having choice and control was internalized by Thomas, seen as a sign of his own ability to be independent. It was not something accorded to him by others, rather something he achieved within himself. “Choice is more like, what I want to live my life…be in control, with controlling myself… and stand on my own two feet.”
As the participants' experience of choice increased, so did their confidence in their own ability to control at least some aspects of their lives. Even participants, such as Tara, Helen and Thomas, who acknowledged some degree of family led decision making or family imposed limitations to choice (Table 2, group 1), expressed a sense of personal control. For these participants, self-acceptance, speaking up for themselves or having control over their emotional responses are all ways in which they experience a sense of personal control.
Superordinate Theme 3—Experience of Limits to Choice and Control
The subordinate themes of accepting limitations and family as final decision maker created the superordinate theme of “experience of limits to choice and control.”
(g) Accepting limitations
The majority of participants, although reporting satisfaction with the level of control in their life, also spoke of limitations imposed on choice and control. At times these limitations were self-imposed due to concerns about their capacity for independent control. In response to questions about the possibility of managing his own money, Sam said
I want to see if I can take me pension back [under his control], which I can try to cope with that. But with the big amount, I can't for the moment because me knowledge is not that strong. It might be safer if I don't know what to do.
A need for limits to control was also recognized by Helen who was concerned that “When it comes to having too much control then you become to have a big head (laughs)…you think that you have too much control and you can control everything.”
Participants accepted family support around practical issues which required choice and decision making, such as financial management. Despite having to ask his mother for access to his money, Cameron perceived that he had the final say and was in control. “Oh…I'd just ask Mum, can you put a little bit more money in my account, that's what I always do…cause it's my money.” For Sam, having his mother control his finances was preferable to a government service, and he purposefully chose his mother to take on this role. However, family support for this was not easy to obtain, he acknowledged having to “nag” his mother “big time” in order to receive the support he wanted.
When family did step in and become involved in the participants' choice making, this was often perceived as a sign of love. Thomas explained this:
At first I felt like she was shouting [at] me and nagging me, then I realized she is not, she is just helping me, advising me, telling me in her…sweet loving heart way…I knew she was just trying to help me and support me.
Similarly, Tara reported that she liked the fact that her brother would want to approve of any potential boyfriend. When asked how she felt about this she replied, “Very good that I've got a good family.”
(h) Family as final decision maker
Many of the participants recognized, and accepted, that their family has the final say in at least some decisions (see Table 2, group 1). This may involve simple, day-to-day decisions in life, as demonstrated by Stewart who reported that his parents always chose, without consultation, what he would be eating for dinner. Similarly, despite having a debit card with money available, when asked what he would do if he saw a DVD or video game that he liked, Stewart responded, “Ring my mum and ask.” And if his mum said he shouldn't buy it he would “put it back for another time.”
This acceptance of the family as final decision maker also occurred around more major life decisions. Thomas, who is engaged to be married, accepted that the decision on when or if the wedding would go ahead was not his. He acknowledged, without complaint, that his fiancée's parents had stopped them getting married. “I have to wait on her parents, when they say it's gonna go ahead, when it's all going to happen.” Similarly, when Tara was asked about what would happen if she chose a boyfriend that her parents did not like, she replied, “I don't think I would pick someone that they wouldn't approve of.” And if they didn't approve of him, she responded without question “Well, then I would have to compromise.”
The right to make the final decision was not accorded to just anyone in the family, only to someone trusted. When asked who he would accept financial guidance from if his mother was no longer able to do it, Sam was adamant that he would not allow his father such control.
The aim of this study was to explore the lived experience of adults with ID as they negotiated choice and control within the context of family relationships. In line with IPA methodology, it is an attempt to “make sense of the participant trying to make sense of what is happening to them” (Smith et al., 2009, p. 3).
The results of this study, while supporting many aspects of previous research around the importance of family to adults with ID, give a deeper understanding of the perspective of adults with ID. The participants reinforced the belief that close family relationships are important and a source of happiness and support to adults with ID. Contrary to previous research that people with ID believed that overprotectiveness of parents was a main barrier to self-determination (Haigh et al., 2013; Jahoda & Markova, 2004; Shogren & Broussard, 2011); this research gives a more nuanced view of parental and family involvement. Although some participants recognized that their family is protective, they felt this was generally reasonable and usually saw it as a sign of love and support, not overprotection and restriction. The participants reported trusting relationships in which choice making was supported and decisions generally negotiated. When limitations were put in place, these were usually accepted as being in their best interest. Participants clearly differentiated who in their family they trusted and turned to for support. The active choice of involving family members with whom they had a positive relationship may account for this acceptance of limitations.
The degree of involvement of family in day-to-day activities with the participant, which may be associated with family characteristics, living situations and proximity, seems to be related to the level of independent choice and decision making (see Table 2). Previous studies have shown that reduced involvement of disability staff, as occurs in semi-independent living situations compared to group homes with 24-hour staffing, creates an environment in which there are increased opportunities and expectations for independent choice making (Stancliffe & Keane, 2000). The results in the present study support a similar conclusion for people with ID in relation to family involvement in choice and control. Participants, such as Rosa and Sam, who live separately from family and not in close geographical proximity had, as predicted by McCausland, McCallion, Brennan, and McCarron (2017), less family contact and appeared to make most choices and decisions independently (Table 2, group 3). Any support with decision making required a direct and often repeated request to family before such support was provided, as shown by Sam's need to “nag” his mother to support his financial decision making. These participants had greater opportunity for independent decision making, and were expected to be able to do so in most circumstances. In contrast, for participants with close family involvement, including Helen, Stewart, Thomas, and Tara, mutual decision making was reported as a common occurrence (Table 2, group 1). However, these participants did not report dissatisfaction with this approach; they did not view such mutual decision making with family as a reduction in their level of control. In cases when choices were limited by family, such limits were generally readily accepted and viewed as a sign of love and care.
The stories of family life told by participants are consistent with the life-course view, which recognizes people with disability and their family as being a part of a relationship which adapts in response to life's challenges and stages (Hewitt, Agosta, Heller, Williams, & Reinke, 2013). Although the participants all recognized an increase in choice and control as they aged, the degree of change and resultant level of choice and control was not directly linked to age. It was the oldest two participants, Sam and Rosa, and the youngest two, Cameron and Stacey, who reported the least involvement of family in choice and decision making. Most of the participants recognized changes in family relationships as they became adults, acknowledged the aging of parents, experienced siblings moving out of the family home, and saw a need to plan for the future when current support structures may not be present. Throughout all these stages, family remained central to both their experiences and plans for the future. The participants viewed their relationship with family as a reciprocal one, recognizing the care given to them by family, and identifying actions of their own which they viewed as supporting the family. These actions ranged from the practical, such as mowing the lawn, to emotional support and “having their back.” Consistent with previous research on the self-construct of adults with ID (Midjo & Aune, 2016), participation in reciprocal care gave a sense of equality and place within the family. Rather than seeing themselves as simply a recipient of care, they viewed themselves as a proactive contributor to their family.
The participants' acceptance of family influence and limitations to choice is consistent with the tripartite ecological theory of self-determination (Abery & Stancliffe, 2003). As discussed earlier, this theory recognizes voluntary ceding of control to others as a form of self-determination. Participants spoke of being aware of whom in their family they trusted and would prefer to give control. The theory also recognizes the desire for collaborative rather than independent decision making. The acceptance, and at times preference, for family-led decision making reported by the participants is consistent with this theory of self-determination. However, this theory also asserts that the individual should retain the ability to retake control if they desire. It is unclear whether the participants in this study would be able to take back control if they so wished.
Participants reported satisfaction with the level of choice and control in their lives despite a number also describing family limitations being placed on the choices they make and therefore the degree of control they have. This apparent contradiction may be explained by understanding the relationships developed between adults with ID and key family members. Key trusted family members are identified as a result of personal experiences. These may be one or both parents, but in some cases were a sibling or other family member. For these key family members, participants reported a range of emotions including love, gratitude, and reliance. Any limitations to choice were then seen within the context of this caring relationship, recognized and accepted as a sign of love and support. The strength of the relationship, possibly affected by family characteristics, living situations and proximity, appears to be an important factor in the acceptance of limitations to choice and control. Where the relationship with family was problematic, little control was exercised by family members (see Table 2, group 3). Individuals who had daily contact with family, mostly positive family relationships, and a high level of family involvement in their daily activities were most accepting of limitations to choice and control (see Table 2, group 1). In a previous study of the experience of staff support for self-determination, also from the perspective of people with ID, positive relationships with staff encouraged adults with ID to request support, be open to staff guiding their decision making, and even relinquishing some control to those staff (Nonnemacher & Bambara, 2011). In the same way, the participants of this study appeared happy to accept guidance and limitations from trusted family members. If undertaken freely, this acceptance may be recognized as a form of choice making and self-determination.
This study intentionally focused on the lived experience of a small number of purposively selected participants, as recommended when using IPA methodology (Smith et al., 2009). The participant group is not a homogenous one. Although all are adults with ID with mild to moderate levels of impairment, their age, living situation, proximity to family and family characteristics varied. This variation gives a more representative picture of the range of lived experience of family, and allowed us to identify issues such as trust, family relationships, and involvement in day-to-day activities as being related to choice and control. However, the perception of trust may have been influenced by family characteristics. For example, for participants with separated parents, closer geographical proximity of one parent and the resulting increased contact may well influence the perception that this parent was more trustworthy. The results may not be representative of all adults with ID. As no one with ID with a severe or profound level of impairment, or with a significant communication barrier participated, the experience of these people is not represented in this study.
This study provides insight about how important the family is to adults with ID and their experience of choice and control. It exposes the complexity of family relationships and how support for the development and attainment of self-determination is strongly influenced by the characteristics and proximity of family. Attainment of choice and control, or the broader concept of self-determination, for adults with ID, may need to be viewed not as an autonomous action but rather an interdependent one, usually guided by family. In line with the tripartite ecological theory of self-determination (Abery & Stancliffe, 2003), the willingness to give some degree of control over to trusted family members may be recognized as an exercise of personal choice and control. However, the interaction of family variables such as proximity, family composition and relationships, with individual characteristics such as age and support needs, on the degree of acceptance of family imposed limitations is complex. There is a need for a greater understanding of how families support the development of self-determination, recognizing the complexity and variance of family characteristics, if the disability policy goal of increased choice and control for adults with ID and their family is to be reached.
This study focused on the experience of adults with ID, exploring their perception of family relationships and the resulting impact on control within their lives. To fully understand how choice and control is negotiated within the family, further research is required to understand and compare the perspective of family members, focusing on how they balance supporting the person's choices with any concerns about decision-making capacity and safety. Understanding the experience of family members will provide insight into the role families play in the development and support of self-determination of adults with ID.
The authors would like to thank the participants who gave so generously of their time, and the organizations that assisted with recruitment.