People who have intellectual and developmental disabilities (IDD) often rely on caregivers to assist in the medication management process. The aim of this study was to learn from caregivers, who are either family or support staff, what major issues arise throughout the process of managing medication and how these might be addressed. Problems identified by caregivers include (a) prescribers understanding of insurance and agency policies regarding medication utilization; (b) lack of continuity of care and accuracy of the medication record as well as clinical records; (c) poor communication among patients, caregivers, and clinicians; (d) patient willingness to take medication; (e) caregiver understanding and training of medication-related topics; and (f) the health system being unprepared to work with people who have IDD.
People who have intellectual and developmental disabilities (IDD) have a high burden of illness (Baxter et al., 2006; Krahn, Hammond, & Turner, 2006; Sohler, Lubetkin, Levy, Soghomonian, & Rimmerman, 2009) which often leads to the person taking multiple medications (Burd et al., 1997; Doan, Lennox, Taylor-Gomez, & Ware, 2013). In a population health survey conducted in 2013 of people who have IDD living in Victoria, Australia, medication use ranged from 88.3% of people between the ages of 18 and 39 years, to over 94.7% for people over age 60 years (Department of Health and Human Services, 2015). The prevalence of polypharmacy, with five or more medications, ranged from 30.4% to 45.5% of people who have IDD, increasing with age.
Although no data exist to describe the quantity and nature of medication-related problems that exist for people who have IDD living in the community, studies from the general population highlight what is most likely a similar scenario for people who have IDD. In the general population, medication-related problems involve prescribing errors such as inappropriate drug selection and undertreatment, adverse drug reactions, and poor adherence by the patient (Kaur, Roberts, & Roberts, 2012). Between 5.7% to 16.2% of medication-related hospitalizations are due to inappropriate medication use and adverse outcomes (Nelson & Talbert, 1996). As well, another study found that adverse drug events occur in up to 25% of ambulatory care patients prescribed a medication (Gandhi et al 2003).
People who have IDD often rely on others for support of day-to-day activities. Medication management is one health-related activity where caregivers often provide assistance. The medication management process is complex. First, the person who has IDD, often along with caregivers, interacts with a physician or other health care provider. Successful interaction leads to appropriate treatment decisions, including the writing of a prescription. Poor communication between clinician and patient and caregiver may lead to incomplete or inaccurate assessment of medical problems or response to medications already prescribed. Poor documentation of medications and supplements taken by the person who has IDD may lead to unsafe prescribing of prescription medication (Mastebroek, Naaldenberg, Lagro-Janssen, & van Schrojenstein Lantman de Valk, 2014).
The second step of the medication use process is obtaining medication from a pharmacy. Errors in medication dispensing are relatively uncommon, occurring in a range from less than 1% to 4% of prescriptions dispensed (Allan, Barker, Malloy, & Heller, 1995; Cheung, Bouvy, & De Smet, 2009). Errors include (a) dispensing the wrong product, (b) misinterpreting instructions, and (c) placing medication in the wrong patient's bag for dispensing (Ashcroft, Quinlan, & Blenkinsopp, 2005). The practice of counseling the person picking-up the prescription on information to appropriately and safely use the medicine occurs less often than is expected (Allan et al, 1995).
The third step of the medication use process is taking of the medication. It is important for the patient and caregiver to understand what the medicine is for, how to take the medicine, and what to expect from the medicine. Medication adherence is a complex behavior that, to be conducted successfully, requires knowledge, motivation, and supportive beliefs and attitudes towards medication therapy. People who have IDD often do not have adequate knowledge or understanding of their prescribed therapy (Huneke, Gupta, Halder, & Chaudhry, 2012). There are additional barriers to adherence, including cost of therapy, access to care, complexity of the regimen, and other factors (Osterberg & Blaschke, 2005).
The fourth step of the medication use process is the monitoring of therapy. Therapy monitoring includes assessing the intended effects of the medicine (such as blood pressure for antihypertensive drug therapy) as well as unintended effects (such as adverse drug reactions). For example, errors in technique in use of automated blood pressure devices at home lead to erroneous treatment decisions (Yarows, Julius, & Pickering, 2000), whereas errors in home blood glucose monitoring are common (Alto, Meyer, Schneid, & Kindig, 2002). Last, the fifth step in the medication use process is the re-evaluation of therapy by the prescriber using feedback from the patient and caregiver regarding use and effects of the medicine, which, for chronic therapy, leads to reordering of the medication.
The general notion is that most people who have IDD require assistance to conduct either some or all these steps on their own and ensure the safe and effective use of medications. As a result, it is generally the caregiver who is responsible for assisting in managing medications. Essential health-care related skills required of a caregiver include the ability to (a) monitor therapy, (b) interpret information from health care providers as well as interpret observations of the person with IDD, (c) make decisions about when to give or when to hold a medication, (d) make adjustments to therapy, (e) provide direct care, (f) assess resources, and (g) negotiate the health care system (Lau et al 2009; Schumacher, Stewart, Archbold, Dodd, & Dibble, 2000). One would anticipate that many problems faced by the general population associated with medication management would be the same for people who have IDD. Additional issues for people who have IDD may include their ability to understand the reasons for using medications, incorporating medication administration into their daily routine, and communicating medication-related issues to clinicians and caregivers, to name a few.
The aim of this study was to learn from caregivers who are either family or support staff what major issues they encounter throughout the process of managing medication and how these might be addressed. The use of qualitative research methods, such as focus groups, is an important first step in developing a program of research when little information exists in the literature. By involving caregivers who have experience with the medication management process for a person who has IDD, we were able to identify key areas of concern from experienced individuals. Focus groups have been described as particularly useful at an early stage of research as a means for eliciting issues which participants think are relevant, which can then be used to inform design of larger studies (Vaughn, Shay Schumm, & Sinagub, 1996).
This was an exploratory descriptive qualitative study using focus groups. A qualitative methodology was selected since the aim of the study was to explore issues encountered by caregivers during the medication management process (Taylor & Bogdan, 1998). Focus groups were selected over individual interviews because the intent was to have participants share different experiences as an interactive group in order to stimulate and deepen caregivers' reporting of their experiences (Freeman, 2006; Kitzinger, 1995; Morgan, 1997).
Setting and Participants
The goal was to recruit six to eight participants for each focus group as this number has been established as optimal to encourage contribution of each participant and to compare and contrast their experiences (Wilkinson, 2008). The study was conducted with the cooperation of community-based agencies (The Arc of Kent County and The Arc of Detroit, the Iosco Regional Inclusive Community Coalition, and the Macomb County Mental Health Authority) that provide advocacy and support services for people who have IDD across the state of Michigan. Potential participants were recruited by announcements being placed in agency newsletters. All caregivers of people who have IDD enrolled in the agencies were eligible to participate as long as they met the following inclusion criteria: (1) being 18 years or older, (2) caring for a person who has IDD who was age 18 years and older and who took at least one prescription medication, (3) being able to speak and understand English, and (4) having transportation arranged to travel to and from the sites where the focus groups were held.
There are two basic categories of caregivers: family or friends and support staff. The basic functions of medication management that caregivers are tasked with should not vary greatly between these two types of caregivers. However, agencies that employ support staff usually provide medication pass training programs, as well as have policies and procedures that govern the medication management process within the resident's home. Family caregivers, acting as volunteers for the person, often have not taken medication pass training. The family may have a medication management routine that they follow, but it would be family specific and dependent on the caregiver's experience with medication management. The distinction between the two groups of caregivers is important, as there may be very similar as well as very different issues reported.
Focus groups were conducted between June 2012 and April 2013 in conference rooms located at each of the participating agencies. A total of five focus groups were conducted with a total of 30 caregivers. Two focus groups consisted of only support staff, which allowed for a discussion of issues related to providing care for nonrelatives working under specific agency protocols and procedures. The two were from the Arc of Kent County (four participants) and the Macomb County Mental Health Authority (eight participants). One group, from the Arc of Kent County (three participants) consisted of only family members, which allowed for sharing of aspects of caregiving medication management potentially unique to this group. Two focus groups were a mix of support staff and family caregivers, which included the Iosco Regional Inclusive Community Coalition which had three family and four support staff and the Arc of Detroit which had six family and two support staff. The combined groups raised similar issues as the other groups, with the exception of issues related to medication pass policies of agencies, which were issues uniquely raised by the support staff. Overall there were 27 females (90%) and the mean age was 49.3 (SD = 16.5) years (range 24−79). An incentive of $20 was provided to each participant. Ethics approval for the study was granted by the university's human investigations review committee and written informed consent was obtained from each participant.
All focus groups were facilitated by the same investigator (S.R.E.) using a semistructured interview guide designed for the study (refer to Table 1). The questions and probes were framed based on the steps of the medication management process: (a) interacting with the prescribing physician; (b) acquiring the medication from a pharmacy; (c) storing/taking/administering the medication; (d) monitoring for adverse and intended effects of the medication; and (e) refilling medication. Each step of the medication management process was described to the participants, followed by questioning about issues faced by caregivers specific to that step. For example, the first step in the process is presenting with the patient at the prescriber's office where the prescriber, after assessment of the patient, may make the decision to initiate medication therapy. Participants were allowed to discuss any issue they encountered with prescribers when advocating for their client. This same procedure was continued for each of the subsequent medication management steps. At the end of the focus group discussions demographic data including age, gender, and type of caregiver (family member or support staff) were collected from each participant. All focus groups were audiotaped while the facilitator also kept detailed notes. Respondent names were not stated verbally when comments were made, but notes taken by the facilitator were able to connect statements to type of caregiver.
Focus group discussions were digitally recorded and transcribed verbatim. The investigator S.R.E. read through the transcripts of the mixed focus groups to assign caregiver category to statements made, using notes taken during the focus group. The transcripts were read independently by all three investigators (S.R.E, T.M.S., and X.T.). Two investigators reviewed the transcripts manually, making notations directly on the transcript as well as in a codebook of themes that emerged. The third investigator used the software NVivo8 to facilitate documentation of themes (http://www.qsrinternational.com). NVivo is a software program that is a work tool used to document investigator-identified themes and quotes in the transcribed text. The process of identifying themes and exemplary quotes is similar whether the investigator uses a manual process or the software to document. A thematic content analysis was performed and issues encountered by caregivers during the medication management process were coded (Miles & Huberman, 1994; Saldaña, 2009). Exemplary quotes were identified for each major theme and documented for further discussion between investigators.
Three rounds of thematic content analysis were performed. After each round the investigators met to compare and contrast the themes and accompanying exemplary quotes that each identified, grouped based on the steps of the medication management process. Attempts were made to obtain congruence between themes identified by investigators. By the end of the third round, congruence was obtained on all themes identified as well as identifying the exemplar quotes. The analysis was performed inductively and deductively for the five medication management steps where the themes emerged from the data obtained for each of the medication management steps (Patton, 1990). This process allowed for multiple specific comments that were related to eventually be coalesced into one major theme. Each passage that was coded was grouped by thematic similarity or relationship into each investigators codebook under one of the five steps of medication management. With each round, discussion led to development of common themes. In the end, the process of individualized coding and group discussion led to the development of common, major themes. Consensus was derived for themes that emerged for each of the medication management steps when the codebooks of each independent reviewer were discussed at three different times and consensus on interpretation of the content was achieved. Each theme was determined and exemplar quotes were extracted to support the analysis and to illustrate themes. Themes were identified as provided by support staff or family.
Issues at the Physician's Office
Obtaining a prescription that is complete, accurate, and in sufficient quantity; lack of physician awareness of agency-specific medication management procedures
When trying to obtain prescriptions from physicians, caregivers (support staff comment) reported having issues making an appointment for physicians who would only renew a prescription after observing the patient. In other cases, physicians refused to write a prescription for renewal medication over the phone or fax if asked by caregivers, preferring to be contacted by the pharmacy (support staff). In addition, caregivers noted a lack of familiarity of physicians with support agency rules and regulations about medication utilization (support staff). Examples include physicians not writing discontinuation orders, not including specific information in the prescription such as duration of short-term therapy, quantity required, ambiguous instructions and stop date for medications given when needed (pro re nata or PRN), or not providing paper prescriptions along with the electronic version, which are required for the group home records (support staff). Issues with physicians not facilitating prior medication authorization or generic substitution were also raised, and these culminated with patients running out of medications until these issues were resolved (family and support staff).
Another thing they [physicians] get frustrated with is the prior authorizations. Some doctors won't do it so we can get things moving. Same with generics. They want the drug that they want and that's just it. They won't budge. Then there's a fight between the pharmacy and the doctor to get the drug. (FG4 – family caregiver)
Relationship with the physician; physician familiarity in working with people who have IDD
Positive experiences with physicians and other health professionals empowering people who have IDD were discussed among caregivers. Physician's working directly with the patient and taking into consideration the patient's need for independence were mentioned (support staff). Caregivers acknowledged the importance of physicians being perseverant when treating people who have IDD and addressing patients directly instead of talking exclusively to the caregiver during the appointment. By listening attentively to the patients' needs, physicians were able to reduce the number of medications the patients were on (family and support staff).
However, there were also remarks to physicians' lack of patience and ability of physicians to work with and address patients directly (family and support staff), with one participant describing that a physician refused to treat her son because he feared aggressive behavior from the patient (family caregiver). This particular situation led to the caregiver's perception of inadequate patient care. Other caregivers also reported issues when visiting emergency rooms:
In the E.R., I don't think the doctor gets to look at the other medications that the patient is on. Then we have to sort things out. People with disabilities are treated different. […] They [physicians] look for a quick fix. They want the people with the disability to be kept quiet. (support staff)
Several participants across different groups expressed their disappointment with not being heard when advocating for the patient (family and support staff). One caregiver voiced that
It's intimidating when you're speaking to someone with a medical degree and you're telling them something and they're not listening or hearing you. (support staff)
In many instances, caregivers perceived that the lack of consideration for what the caregiver had to say compromised an accurate diagnostic and resulted in caregivers seeking the care of other medical practitioners. At the other extreme, there were caregivers who felt recognized as important information sources for physicians with regards to the provision of an accurate medication list and their ability to recognize symptoms of people who have IDD as a result of having a close and daily relationship with the individual (family and support staff).
Issues Obtaining Medications From the Pharmacy
Several issues were reported when filling prescriptions at the pharmacy. Prescriptions written for a 30-day supply are filled correctly, but because of insurance rules, the prescription could not be filled with a full 31-day supply, leading to shortage of medication for months with 31 days. Another problem has to do with residents of group homes going on leave for overnight stays with family or on vacation. Pharmacies will not dispense refills early when residents leave for extended periods of time. Another issue has to do with pharmacies not being able to print new labels when the medication therapy has changed. People who have IDD who have had therapy changed may be required to use their current medication that was dispensed for that month, but with new, different instructions. The pharmacy cannot dispense without a prescription, and the physician does not provide a new prescription, resulting in the medication container in the home having improper instructions. This could lead to an improper dose of medication being taken or administered. Shortage of medications would occur at times (not enough medicine to fill a reorder), but the remainder of individual patient's medications would be provided when the pharmacy was restocked (family caregiver).
Positive experiences with pharmacies during the medication reordering process were also discussed. Automatic refill systems were valued among caregivers and several of them had pharmacists calling to remind that it was time to have a refill (family and support staff). Caregivers also mentioned that pharmacists would contact physicians directly to obtain new prescriptions to make sure that the patients would not run out of medications (family and support staff).
I'm on an automatic call so if I forget about it, they give me a call and say “the prescription needs to be refilled, do you want to fill it?” (support staff)
Prescription insurance coverage and insurance company utilization policies
Another important issue highlighted by caregivers when filling prescriptions was associated with prescription insurance company polices. Caregivers reported problems identifying (a) which medications were covered by insurance companies, (b) the medication co-payment schemes (copay tiers), and (c) alternative medications that could be considered when the medication originally prescribed by the physician was not covered by the insurance company (family and support staff). Caregivers expressed frustration with the process of prior authorization, a common rule that prescription insurers use to control costs by requiring the prescriber to contact the insurance company to justify use of the medication before it can be dispensed to a patient.
The insurance companies dictating what medications you can and can't use is very frustrating. You find a drug that works and then, three months later, they refuse to fill it without a pre-authorization and they want you to try seven other drugs before they'll refill the one that works. (family caregiver)
Relationship with the pharmacist
Two caregivers from different groups expressed negative experiences with their pharmacies arising from issues filling prescriptions (support staff). One of the caregivers articulated that
You get a yellow slip that says prior authorization needed and it's up to you to figure it out. (support staff).
Most participants, however, reported having a good relationship with their pharmacists and acknowledged their expertise in identifying potential drug interactions, warning about side effects, counseling about medication administration, and assisting in the management of medications costs (family and support staff). Caregivers recognized positive characteristics of pharmacists such as flexibility, listening, and accommodating special situations or circumstances (family caregiver). In one of the focus groups, a caregiver described how pharmacists would come to the group home facility to (a) educate staff, (b) go through the medication sheets, (c) assess the medication procedures in place, and (d) explain the reordering process to facilitate the staff's work (support staff).
Issues Administering Medication
Patient refusal to take medication
One of the issues with medication administration that caregivers frequently reported was patient refusal to take the medications (family caregiver and support staff). For people who have IDD living at home, parents stated that they would try to explain the need for taking the medication, especially if they perceived the medicine was critical for their child's well-being (e.g., seizure medication). When persuasion was not successful, parents reported having to force medication taking through various means:
There have been times when H. refused to open her mouth. Or she'd push it away when she was younger. We would have to physically hold her hands and open her jaw to get it in. There was no way to make her understand that she needed it and it was good for her. (family caregiver)
For people who have IDD living in group homes, support staff acknowledged that people have the right to refuse medication which causes the staff member to be concerned about the health of the patient (support staff). Being familiar with the patient was often noted to be an asset, as well as being able to redirect patients to other activities that eventually enable the caregiver to administer a dose of scheduled medication (family caregiver and support staff). Situations of refusal cause tension in some group homes and are usually discussed with the teams to seek adequate strategies to deal with this behavior (support staff). Despite the occasional time where patients decide not to take their medication, support staff reported that their residents took medication without hesitation. The support staff felt that this may not be the case when people who have IDD are living independently or with family.
Medication non-adherence was reported to be both intentional and non-intentional (family caregiver and support staff). Intentional non-adherence was attributed to patients experiencing side effects from medications, with one caregiver stating that patients would complain about how a specific medication would make them feel (support staff). The same caregiver stressed the importance of listening to patients and understanding patients' feelings about medications. Non-intentional non-adherence was noted when patients missed doses due to forgetfulness. Some people who have IDD, who were encouraged to actively and independently manage their medications, would occasionally miss doses of medication, as evidenced in the following statement:
One of my individuals will occasionally forget to take their med and I have to talk to him to make sure that he understands how important for his independence that he takes it. (support staff)
In group homes, sometimes morning doses would be missed or forgotten if patients were still asleep after the designated time of medication passing (support staff). Some agency policies required medication to be passed at specific times of the day or within a window of time. Another reason for non-adherence noted by several groups was when patients left the group home to their parents' home for weekends or vacation (support staff). The parents would forget to give medication or would not give the medication because they believed the patient was overmedicated.
Strategies used to improve medication adherence comprised using (a) reminder alarms, (b) multicompartment compliance aids, (c) direct observation of medication self-administration, and (d) patient education (family caregiver and support staff). In addition to improving adherence, education also aimed to empower patients to manage their medications. Caregivers focused mostly on explaining what each medication was for, the administration schedule and the importance of taking medications in a continuous and repetitive process (support staff).
Medication taste and tablet or capsule size, as well as patient inability to swallow, were mentioned by caregivers as factors affecting the ability of patients to take medication (family caregiver and support staff). Strategies used by caregivers to overcome these issues included crushing tablets and mixing them with food to facilitate administration (family caregiver and support staff).
She can't swallow a pill and what she takes is in pill form so we have to put it in pudding or applesauce. (family caregiver)
Issues specific to group home facilities
Medication errors in group home facilities were reported, although caregivers did not specify the types of errors that have happened. Rather they focused on the strategies of each facility to minimize risk. In one of the facilities the staff refrained from engaging in a conversation with either patients or other staff during the preparation of the medication. Other facilities used a double-check procedure where two staff members were involved in medication administration: one being responsible for administering the medication and the other for confirming that the correct medication was prepared and given to the specific patient. After administration, both staff members sign the medication administration record. In addition to the double-check procedure, some facilities established that the medication administration was to be performed individually in a reserved area of the house. During shift exchange, staff beginning and staff finishing their shifts will go through the medications of each patient to avoid errors in subsequent administrations.
Our home used to have a lot of errors, but now when we pass meds in the kitchen, and we keep residents away from passers as much as possible. They come in and sit in the chair, one person watches, one person administers. (support staff)
Issues Monitoring Therapy
Difficulty identifying side effects from medications
Several caregivers articulated having difficulty identifying side effects from medications, particularly in nonverbal patients who are unable to express their symptoms (family caregiver and support staff). This requires caregivers to have a considerable knowledge of their patients and be able to attribute the origin of their patients' experienced symptoms.
We had a person who was non-verbal, was put on a drug and started rolling his eyes and laughing… it was just strange. He never laughed before. It changed his behavior and you have to decide if it's a side effect or a behavior. (support staff)
Caregivers' need of additional training
Family as well as staff working in group homes expressed their concern about not having enough knowledge-base about medications, which is evident in the following quote:
Sometimes someone would ask what the medication was that they were taking and what does it do. That's where it got difficult because I didn't know and I had to go check. I mean, I know for the most part what these meds are, but when you have to explain it to someone, it's hard. In those moments I didn't really feel qualified. (support staff)
The same individual expressed how nurses who performed in-services at the group home were valuable assets in terms of medication education to staff members.
Issues Using the Health Care System
Unpreparedness of the health care system
In general caregivers experienced a lack of preparation of the health care system to provide medical care to people who have IDD (family caregiver and support staff). There were several instances mentioned where health care providers did not seem to know how to communicate with the patient and would not listen to caregivers (either family or employed) who could provide meaningful information about patient symptoms, behavior, and abilities (family caregiver and support staff).
That whole experience was traumatizing. As a result of not listening, they [physicians] did whatever they wanted to sedate/restrain her and she came home with injuries. It wasn't a pleasant experience for anyone. (support staff)
Lack of care coordination
Caregivers manifested discontentment with the lack of consistency in doctors assisting the patient during hospital visits or care in community-based clinics (family caregiver and support staff). This resulted in caregivers having to repeatedly explain the clinical history of the people who have IDD to different physicians.
When I go there I see a different doc every time. Sometimes it's a resident…. I try to request the same one every time, but they don't stay long and I hate having to explain everything all over every time I go. I'd like it to be more consistent. (family caregiver)
Further, this lack of consistency does not allow for the development of a strong relationship between the patient and the physician. A good relationship was regarded by caregivers as a determinant factor in good patient care, given that the better the physician knows the patients, the better he will be able to identify patient symptoms (family caregiver and support staff).
Lack of integration of the information
The lack of integration of a patient clinical history across different health care facilities and practices was consistently mentioned in all focus groups. In some instances, the lack of knowledge of a patient's complete clinical history resulted in the caregiver's perception that the physician may not be able to always provide adequate care to people who have IDD (family caregiver and support staff). This issue was overcome when some caregivers requested a clinical letter from the primary care physician with a thorough description of the clinical status of the patient that could be presented at different health care facilities (family caregiver). Others maintain a health history at the home of the people who have IDD (family caregiver and support staff).
Another commonly mentioned problem was the inconsistency of the medication list among physicians (family caregiver and support staff). Caregivers carried the responsibility of updating the medication list of the patient and providing this information to the different health care providers (family caregiver and support staff).
I take his list of medicines with me. I've had him in three different places and none of them have the same list that I have. So I'm the only one that knows all of the medications this individual actually takes! (family caregiver)
Another way to examine the responses was to categorize and compare themes based on which type of caregiver provided the information. There were themes that were consistent between family and support staff caregivers and included (a)communication issues between physicians and patients and between physicians and caregivers, (b) the lack of care coordination and patient information consistency across different health care facilities, (c) limitations in caregiver training related to medications, and (d) issues with the policies and procedures of insurance companies and pharmacies that affect timely dispensing of medications to patients. Both groups mentioned that administering medications can be challenging due to the person for whom they provide care refusing to take medication for various reasons. They also both expressed concern about being able to identify adverse drug effects. Unique to the support staff comments were issues related to agency rules and procedures around medication management.
This study identified issues experienced by caregivers of people who have IDD at the different steps of obtaining and using medications. A number of problems and issues identified by caregivers are similar to problems noted in the general population. These issues include (a) poor communication between patients and providers, (b) lack of care coordination and communication between physicians, (c) communication problems between physicians and patients, and (d) issues with pharmacy prescription plan (insurance) policies and procedures that may limit available to certain medications. There were themes that are similar to other specific patient groups such as older patients with dementia or for pediatric patients, where communication between patient and physician may be difficult, and where a caregiver is often integral to providing information about the patient to the physician. Another shared theme would be nonadherence due to patient's behavior, where they have the right to forego treatment if they wish. Relatively unique themes to people who have IDD identified in this study includes the perception of unpreparedness of health care professionals and of the health care system to respond to the needs of people who have IDD, as well as the intersection of supports agency policies regarding medication pass, patients willingness to take medication, and physician's and pharmacies prescribing and dispensing rules that may not completely agree with agency rules.
Several caregivers who participated in the study reported situations where the provision of care was perceived to be substandard and attributed this perceived low quality of care to a lack of qualification and preparation of health professionals to work with people who have IDD, a finding similar to what has been previously discussed in the literature (Hayden, Kim, & DePaepe, 2005; Krahn et al., 2006; Ward, Nichols, & Freedman, 2010). One study indicated that there were accessibility issues when trying to find health providers specialized in treating people who have IDD and that this shortage resulted in patients remaining with their pediatrician as their primary care provider (Ward et al., 2010). This could have further implications in terms of preventive and screening tests that should be performed at specific points of an adult's life, like immunizations and breast or cervical cancer screenings (Horner-Johnson, Dobbertin, Andresen, & Iezzoni, 2014; Lewis, Lewis, Leake, King, & Lindemann, 2002; Lofters et al., 2014), for which the pediatricians might not be aware (Ward et al., 2010). However, even general practitioners did not feel it was their responsibility to perform yearly health checks for people with IDD (Bond, Kerr, Dunstan, & Thapar, 1997). In another study, however, general practitioners expressed the multiple challenges they face when caring for people who have IDD (Fredheim, Haavet, Danbolt, Kjonsberg, & Lien, 2013). This raises an issue of training of health care providers to work with people who have IDD. Health care providers often lack knowledge, skills, and confidence in working with people who have IDD, and may hold negative attitudes towards this group (Iacono & Davis, 2003). In an effort to increase the number of health care professionals who have at least minimal training in the care of people who have IDD, the American Academy of Developmental Medicine and Dentistry (AADMD) published an interactive report highlighting the objectives and competencies that should be incorporated in health professional education training programs. The curriculum includes core information that health providers should know about when treating people who have IDD.
In addition to accessibility issues, people who have IDD may experience difficulties in recognizing and communicating their health problems (U.S. Office of the Surgeon General, & U.S. Office on Disability, 2005). This can result in health providers making assumptions about patients' abilities to communicate and therefore refrain from communicating with them directly (Ward et al., 2010). In this study, caregivers reported that some physicians were very committed to addressing patients directly, but others would not communicate with the patient or with the caregiver, potentially leading to situations of misdiagnosis or inappropriate treatment. In addition, caregivers in our study reported that some health providers had negative assumptions about patients with difficult behaviors and would have more tendencies to sedate them, which is similar to the experiences of caregivers in another study (Ward et al., 2010). Regrettably, the results from this and earlier studies appear to demonstrate that one of the goals of The Surgeon General's Call to Action to Improve the Health and Wellness of Persons With Disabilities, which is to have health care providers with the knowledge and tools to screen, diagnose, and treat the whole person with a disability with dignity (U.S. Office of the Surgeon General, 2005), may not be fully met.
At the health care system level, people who have IDD experience health disparities across several indicators of health: (a) life expectancy and mortality; (b) morbidity; (c) uptake of health promotion and disease prevention; and (d) health care access, utilization, and quality (Ouellette-Kuntz, 2005). In addition, our study showed that the fragmentation of care, namely the lack of consistency in physicians looking after the patient and the lack of integration of the information across different health care facilities, is also an important issue as perceived by caregivers. Another issue consistently reported across focus groups in our study was the lack of congruence of the medication list of the person with IDD between prescribers' medical records and the list kept at home. The responsibility for maintaining and updating the list often is the responsibility of the caregiver. A recent study in general medicine clinics found that only 15% of patient's medication lists matched exactly that of their physician's list, and another 31% were accurate only for prescription medications. (Benavides Reedy, Yeh, Noweack, & Hickner, 2016).
Caregivers recognized the need for further training regarding medications and respective side effects. Although employed caregivers who oversee the care of people in supervised settings often receive training about medications and medication administration, the people they supervise account for a relatively small proportion of all people who have IDD living in the community. Still, employed caregivers do not feel comfortable with their level of training and education regarding medications (Cardol, Rijken, & van Schrojenstein Lantman-de Valk, 2012; Singh et al., 1996). In a previous study, the knowledge and skills deficits of employed caregivers constituted a significant barrier to the appropriate monitoring and management of pharmacotherapy for people who have IDD (Christian, Snycerski, Singh, & Poling, 1999).
At the policy level, several actions have already been taken. The U.S. Surgeon General report calling for improvement in the health of persons with disabilities outlined the need for an appropriate training of health care providers, improved accessibility and quality of services, and adequate financing procedures to ensure quality care (U.S. Office of the Surgeon General, U.S. National Institute of Child Health and Human Development, & Centers for Disease Control and Prevention, 2002).
Systems to improve coordination of care, incorporating technologies to enhance communication between the patients' physicians, patient and caregiver, and other important entities such as pharmacies, other health care providers, durable medical good distributors, and insurers or payers may improve efficiency and safety of care provided. The notion of the patient-centered medical home is particularly relevant for people who have IDD, with the patient and family (and caregivers) partnering with the primary care provider who coordinates the complex care often required by people who have IDD. Generally, medical home models have resulted in improvement in care and, in some categories, lower costs (Jackson et al., 2013, Kastner & Walsh, 2012). The addition of a pharmacist to the medical home has resulted in improved medication-related outcomes, and may be especially relevant to improve the medication management process for the person who has IDD and their caregivers (Nigro et al., 2014; Smith, Bates, Bodenheimer, & Cleary, 2010).
Limitations of the Study
There are limitations to be noted when presenting a study using qualitative research methods, such as focus groups. The skill and experience of the group facilitator is important to elicit meaningful themes from the participants. The level of engagement of the focus group participants is related to the communication skill of the facilitator, as well as the mix of personalities present in the focus group. For the present study, the facilitator had experience conducting qualitative research which enabled him to fully engage the members of each group. The facilitator also used standardized scripts to ensure continuity between groups.
Another limitation of qualitative methods is the analysis of the information obtained from participants. The analysis plan used to derive the important themes is considered standard for analyzing focus group data. Categories and themes were generated using the language of the subjects. A third limitation is the use of one focus group that was composed of only three caregivers. The themes derived from this group were similar to the other groups, which gave the investigators confidence to include their data in the overall analysis.
Bias is always an inherent problem when conducting research. In the case of the present study, there are several types of potential bias. First is the bias related to who the participants were for the focus groups (selection bias). Realizing there are two basic types of caregivers—family and friends, as well as support staff (not always mutually exclusive), the investigators recruited representatives from both in an effort to obtain a broad perspective. The family as well as support staff were recruited through the contact information on hand from the supports agencies that participated in the study. These individuals were required to have transportation to and from the meeting, and must speak and understand English. These people may be more motivated, more likely to report problems, or more engaged in the process of care for people who have IDD than others who did not participate. We felt that the information obtained from all focus groups was valid based on its similarity to the problems encountered by the general population, as well as identifying issues that were relatively unique to people who have IDD. These themes were repeated often in various focus groups, leading the investigators to conclude they were valid and representative.
Yet another limitation is that the five focus groups were conducted throughout one geographic area, the state of Michigan. It may be that some of the policies and procedures in place in Michigan which govern health care delivery and medication prescribing and utilization may be different from other states or between agencies providing services within Michigan. However, in the end, we feel that the themes derived from the analysis are common enough that they do not necessarily conflict with potential findings from focus groups that may be held in other states or within the agencies in Michigan. A strength of this study was that it was conducted in urban, suburban, and rural areas of Michigan, in an effort to identify issues that may be specific to location. The findings of the present study are similar to those of a study conducted at the Arc of Massachusetts, Boston, which revealed similar results (Ward et al., 2010).
This qualitative study of 30 caregivers of adult people who have IDD provided information that was common to all people who take medications, and also provided information that is relatively unique to people with IDD who live in supported living environments such as group homes. Caregivers of people who have IDD faced several issues in the medication acquisition. Poor accessibility to and communication with physicians were two themes that emerged as problems at the physician's office. Another provider-related issue was that the medication list kept by the prescriber is often not updated or shared between physicians. At the pharmacy level, medication availability and access due to insurance procedures may lead to people who have IDD not receiving medication when prescribed. Pharmacies are not always aware of group home policies that govern medication administration, which leads to problems with obtaining medication in a timely manner or in sufficient quantities. Patient refusal to take medications was mentioned as a reason for nonadherence. Palatability of the medication was given as one reason for not taking medication. Caregivers also mentioned that they feel they lack adequate medication-related training. Caregivers also note that, at times, it is difficult to identify medication side effects that may be occurring in people who have IDD due to both their lack of training as well as the lack of familiarity with the person who has IDD. Finally, the unpreparedness of the health care system to respond to the specific care needs of this patient population and the lack of care coordination were also highlighted.
The findings from this study provide investigators with valuable insight into the problems that exist for the person who has IDD and who takes medication. Future work to examine system-related interventions focusing on appropriate prescribing, dispensing, and administration of medications is warranted. Further research is also necessary to follow up on the issues of medication training for both the caregivers as well as the people who have IDD.
This study was supported by the Wayne State University Developmental Disabilities Institute.