Three case studies of community occupational therapy for individuals with human immunodeficiency virus.

Occupational Therapy In Health Care, 29(1):11–26, 2015 C 2015 by Informa Healthcare USA, Inc. Available online at http://informahealthcare.com/othc DOI: 10.3109/07380577.2014.941452

ORIGINAL ARTICLE

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Three Case Studies of Community Occupational Therapy for Individuals with Human Immunodeficiency Virus Alexis N. Misko1 , David L. Nelson2 , & Joan M. Duggan3 1

Acute Rehabilitation Unit, Springfield Regional Medical Center, Springfield, Ohio, USA, 2 Department of Rehabilitation Sciences, The University of Toledo, Toledo, Ohio, USA, 3 Division of Infectious Diseases, The University of Toledo, Health Science Campus, Toledo, Ohio, USA

ABSTRACT. Three case studies illustrate the complexities and opportunities in providing community-based occupational therapy services to persons with HIV. An infectious disease physician recommended three clients for therapy sessions in both the home and community. The Model of Human Occupation (MOHO) in conjunction with the Conceptual Framework for Therapeutic Occupation (CFTO) was used to guide the therapeutic process. Assessments measured challenges to clients and client progress in the following areas: leisure, mobility, organization, problem solving, community involvement, transitioning to independent living, fatigue, childcare/play, and home management. This paper describes the three cases with findings suggesting that communitybased occupational therapy has potential to address important issues such as habits, roles, and volition in the HIV/AIDS population. KEYWORDS. Community Based, HIV/AIDS, Model of Human Occupation, Models of practice, Occupational form

Approximately one million people in the United States are living with HIV and approximately 56,300 people become infected each year (Center for Disease Control, 2010). Individuals with HIV/AIDS often experience sensorimotor, cognitive, and emotional problems affecting their occupational profiles including fatigue (Barroso & Voss, 2013), chronic pain (Wantland et al., 2011), problems of mobility (Wantland et al., 2011), peripheral neuropathy (Nicholas et al., 2010), problems of concentration and memory (Murrough & Cohen, 2008), depression and anxiety (Gonzalez et al., 2012), and resulting self-care impairments (Nicholas et al., 2010). Persons Address correspondence to Springfield Regional Medical Center, Acute Rehabilitation Unit, 100 Medical Center Drive, Springfield, OH 45504, USA. E-mail: [email protected] (Received 15 August 2013; accepted 1 July 2014)

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with HIV/AIDS often cope with these deficits against a background of stigma and social isolation (Malone, 2008). The occupational therapy literature concerning persons with HIV/AIDS includes group studies focused on work, school, and volunteering (Kielhofner et al., 2004, 2008a). Prior case studies of the occupational therapy process with persons with HIV/AIDS include Bedell (2000), Braveman & Suarez-Balcazar (2009), Kielhofner et al. (2008b), and O’Rourke (1990) (see Misko, 2012 for summary). However, no prior published case study with the HIV/AIDS population has described individualized occupational therapy services administered over a period of weeks within the home and community. Persons with chronic, long-term health problems in the U.S., including people with HIV/AIDS, seldom receive home-based occupational therapy services unless they have had a recent hospitalization. The purpose of this study was to explore the potential contributions of home- and community-based occupational therapy with three persons identified by an infectious disease physician as having a variety of occupational problems and a willingness to participate. All participants at the time of the case studies were receiving healthcare services from a Ryan White Program, the largest federally funded provider of services for people living with HIV/AIDS in the United States. Ryan White programs provide comprehensive care to lowincome, uninsured patients with HIV/AIDS, including medical and pharmaceutical services, case management and social work, and psychology/counseling. All case study participants had access to and were receiving all of these services. An occupational therapy doctoral student who had completed both Level II fieldwork placements provided services under the supervision of a faculty mentor, a licensed therapist who attended initial evaluations and who provided ongoing supervision. All clients provided informed consent to participate in the following case studies. The Conceptual Framework for Therapeutic Occupation (CFTO) (Nelson & Thomas, 2003) provides a logical system for analyzing occupational interventions and is compatible with various occupational therapy models of practice. According to CFTO, occupational forms, or objective sets of physical and sociocultural circumstances external to the person at a particular time, guide and structure occupational performances that are meaningful and purposeful. These occupational forms are synthesized (set up) to facilitate a correct level of challenge for a client, through collaboration between a client and his or her therapist (Nelson & Thomas, 2003). We chose to use CFTO in conjunction with the Model of Human Occupation (MOHO) (Kielhofner, 2008) because of MOHO’s emphasis on naturalistic occupational forms to address problems of volition, habituation, capacities, and the lived body. Assessments administered to all clients at initial evaluation included the Occupational Self-Assessment (OSA) (Baron et al., 2006), the Model of Human Occupation Screening Tool (MOHOST) (Parkinson et al., 2006), and the Self-Identified Goals Assessment (SIGA) (Melville et al., 2002). The OSA, based on MOHO, measures the client’s level of competence in occupations and the degree to which the client values these occupations. The MOHOST, also based on MOHO, produces non-numeric ratings about the client’s occupational participation, based on clinical observation during a single treatment session. The SIGA identifies the degree to which a client judges oneself as able to complete self-selected, meaningful

Case Studies of Persons with HIV

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occupations. The SIGA also generates an overall score for perceived efficacy in all the things the person wants and needs to do.

CLIENT #1


Initial Evaluation and Goal Setting Please see Table 1 describing basic demographic information as well as multiple serious neurological, orthopedic, and psychiatric diagnoses. Despite his formidable medical problems, the client presented himself in the initial interview as a conversationally fluent person trying to gain insight into his past and present life. He saw himself as lacking guidance in early life, leading to substance abuse and incarceration for assault. He admitted still struggling at the time of case study participation with alcohol and drug use. Although frequently self-critical, he rejected the negative judgments of others who did not understand the challenges he had faced. He reported satisfaction with prior work in political advocacy for persons with HIV/AIDS and looked forward to returning to that role when able. He had a work history as a florist’s delivery driver. He placed high value on friendships and social supports. He was receiving counseling and social work services, though he was inconsistent with attending appointments. Assessments revealed problems in home management, financial management, pursuit of leisure, driving/transportation, mobility, organization, and problem solving. Moreover, there was a mismatch between volition, including personal causation and values, and habituation, including roles and habits. The OSA and SIGA led directly to collaborative development and confirmation of client-centered goals. Initial goals focused on home management, financial management, pursuit of a craft as a hobby, fall prevention, transportation, and

TABLE 1. Brief Profile of Client #1 Single White male, self-identifies as homosexual, aged 57, living for years with two cats in apartment but fearing eviction HIV positive 28 years, borderline personality, major depression, COPD, spinal stenosis, s/p recent cervical laminectomy, neuropathy, lipodystrophy, accidental falls, pain, and fatigue MOHOST-identified strengths: Vocal expression, self-reflection, friendships, support by psychotherapist and social worker, computer skills, varied interests Seven home-based occupational therapy sessions and three follow-up telephone calls Concurrent events: Accidental fall, failure in driving attempt, loss of job opportunity, interpersonal conflict Commencement of therapy Termination of therapy OSA Competence Overall SIGA Progress in Goals

Little/no Change

Decline

48/100 46/100 6/10 5/10 Use of public transportation, fall prevention strategies, expansion of narrative, exploration of leisure interests, budget skill, part of home exercise program, pain level, neck range of motion Knowledge of personal capacities, consistency/inconsistency of self-reports, actual pursuit of new leisure, driving, volunteering/advocacy, home management, posture, acceptance of the lived body Personal causation, engagement with others, occupational exploration, emotional stability

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establishment of a home exercise routine. Driving was deferred as a goal by mutual agreement in order to find success in less challenging occupations in the early stages of therapy.


Therapeutic Occupational Forms Prior to each session, the client and the first author planned the occupational forms for the next session. For example, a plan was for him to clean and organize the kitchen as part of home management. However, at the appointed time, the client stated that he was unwilling to engage in the plan because he did not have dish soap. When the first author suggested that some aspects of kitchen management could be completed without dish soap, the client insisted on focusing on another goal, establishing an individualized exercise routine. This process of advance planning, followed by avoidance of the planned occupational form, followed by improvisation and mutual on-the-spot agreement, became a pattern in the client’s occupational performance, whether in bathing set-up, pet management, financial management, planning routes for transportation in the community, or home management. This pattern required a willingness and ability on the part of the first author to accept the client as he presented himself and to improvise occupational forms that remained consistent with therapeutic goals. In therapeutic sessions, the client was always willing to address meaningful goals even though he was often unwilling or unable to follow pre-set plans. The first author provided the client with a handout pictorially and verbally describing exercises focusing on standing balance and on stretching of the neck and back. The first author provided him with a checklist for documentation of completion of these exercises, demonstrating the exercises and providing corrective feedback as necessary. The client verbally reported satisfaction from the completion of these exercises both in the presence of the first author and also when alone; however, he did not consistently complete the checklists. Prior to the second session, the client reported an accidental fall on the way to the bathroom during the night, but was unsure what had caused the fall. At his request, subsequent sessions included strategies for fall prevention. The first author inquired about the client’s bathing habits, especially nighttime habits, and made specific recommendations (verbally and through demonstration) for behavioral patterns consistent with bathing safety. The first author also measured the tub/shower, retrieved an unused shower chair from a closet, and showed where grab bars and non-slip surfaces should be installed. Other recommendations included removal of clutter from the apartment and balance exercises. Techniques to rise after a fall were demonstrated and practiced. The client reported that he appreciated and benefited from the instructions, but did not show interest in receiving help in the installation of grab bars or non-slip surfaces. When dealing with issues of safety, the first author made specific recommendations even when the client did not request them. In occupations not directly related to safety, the first author focused on active listening, asking non-confrontational questions, mutual problem solving, and providing support. Addressing the client’s self-acknowledged impoverished occupational profile, the first author provided a list of hobbies and avocational interests. The client expressed an interest in crocheting. The first author and a student colleague



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demonstrated elementary crocheting and provided support. Because of his fine motor problems, the occupational form was modified so that the crochet materials were larger than normal. The client reported enjoying the session but did not pursue the craft independently, though he kept the unfinished materials in plain sight. The client enjoyed sharing his life narrative, including low points such as losing his job with the florist, enduring a fall, making a loan that was not re-paid, and frequent canceling of medical appointments. The first author actively listened while making supportive comments and asking questions for clarification. After trust was established, the first author began to ask reality-based questions to facilitate problem solving. For example, when the client discussed the possibility of a new job, the first author asked the client if he would be able to stand for long periods of time, as required by the job. Although plans often were not followed and although independent followthrough did not always occur, all the goals collaboratively identified were addressed in the therapeutic sessions. The client repeatedly reported that he found meaning and purpose in these occupational forms and made short-term, positive adaptations as he learned new strategies. However, the first author noticed that the client often did not employ these newly learned strategies in daily life. According to the CFTO and MOHO, evaluation is an ongoing process that continues throughout intervention. The client’s actual occupational performance in the context of an ongoing series of occupational forms informs the therapist. The therapist then uses this information in synthesizing new therapeutic occupational forms. In this case, the client revealed distractibility, a lack of follow-through after making choices, inconsistency in self-reporting, and a tendency to criticize himself when engaged in occupations such as housecleaning, crocheting, and an exercise regimen. For example, in the middle of cleaning a ceiling fan, he abruptly insisted upon switching to self-reflection on his computer. A typical quote was: “Now the hard part will be sticking to it.” He reported that he always needed to use a cane when walking around his home, but then described walking a mile to the library with no device. Ongoing evaluation also revealed problems of the “lived body” (Kielhofner et al., 2008c, p. 70). For example, the client expressed frustration in saying “Come on fingers, work!” and in describing himself as feeling “trapped in a cage” by his motor limitations and pain. The first author responded to these problems by urging him to work slowly and efficiently, with breaks for rest. The climate of therapeutic sessions remained supportive, encouraging, and positive, with a focus on his successes not his limitations. Care was taken to avoid overchallenges. However, he cancelled several scheduled appointments while stating that he did not feel well enough to engage in therapy. Outcomes and Follow-up After six in-home therapy sessions, the client experienced several setbacks within the span of a few days, including: an attempt to drive was unsuccessful; he learned that a supportive neighbor was moving away; he had a troubling conversation with a former partner that “drew up memories”; and his former employer told him that his prior position as a delivery truck driver had been filled. As Braveman et al. (2006) remarked, stressful events in the environment can force increased awareness of the


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gap between volition and habituation and threaten an individual’s entire sense of identity. He stated that he felt unable to continue with in-home therapy but agreed to a final evaluation and a series of interactions by telephone. Staff at the medical center confirmed that this was a typical cycle for this client, with alternating periods of engagement and withdrawal. During periods of engagement, he sometimes over-challenged himself, for example, by impulsively attempting to drive a car. During periods of withdrawal, he tended to avoid outreach by professional staff and to remain isolated at home while reporting feelings of being overwhelmed by external events. Neuropsychiatric complications in persons with HIV/AIDS are common and often associated with withdrawal from therapies (Himelhoch et al., 2004). As can be seen in Table 1, there was little change in functional status from admission to discharge. However, there are two possible problems with these selfratings. On one hand, the client indicated that the self-ratings might have been under-estimates because of the discouraging recent events. Frequently becoming tearful, he stated: “. . .I don’t know if these scores are going to be a true picture. . ..” On the other hand, the self-ratings might have been over-estimates because he stated that he wanted to help the first author to have success in her project. Evidence of major problems of personal causation can be seen in the statement: “It’s just been rough lately. I feel like I don’t care about anything at all and everything seems sort of stuck and hopeless right now.” In three follow-up phone calls over subsequent weeks, the client reported feeling less stressed and more “under control.” The client described attending his counseling appointments and using coping skills to deal with sudden changes in his environment. He reported performance of his home exercise programs to the best of his ability. However, he reported continued back and neck pain, perhaps in part because his physician was reducing pain medication to avoid long-term dependency. Clearly he had learned new skills in occupational therapy, including skills in individualized exercise, fall prevention, and home management, but largely these were not integrated in daily routines. In these final phone communications, recommendations were made to continue to engage in home exercise, safety training, and occupations that provide success and personal satisfaction, including ongoing construction of his personal narrative with a focus on a desirable future. Having endured a life of many challenges with HIV and other serious disorders, he has continued to see himself as a successful survivor, with alternating periods of occupational participation and withdrawal. “There has to be a reason that God has kept me here for 28 years with HIV. I must be doing something right.”

CLIENT #2 Initial Evaluation and Goal Setting Please see Table 2 for background information. Client #2 had lived in a nursing facility for approximately 2 years, and had just moved into his own apartment 2 weeks prior to beginning home-based occupational therapy. He was receiving social work services, as well as home health aide services up to three times a week.


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TABLE 2. Brief Profile of Client #2 Single Black male, self-identifies as bisexual, aged 50, mobilizing by power W/C and walker, living in new apartment after living in nursing facility for approximately 2 years HIV positive 12 years, transverse myelitis, impaired mobility, low back pain, urinary retention, neuropathy MOHOST-identified strengths: Verbal and non-verbal communication, process skills (especially timing), support from social groups and family Twelve home-based occupational therapy sessions and one in-home follow-up Concurrent events: Assistance from Ability Center, volunteers, and home health agencies Commencement of therapy


OSA Competence Overall SIGA Progress in goals

Little/No Change

Termination of therapy

68/100 72/100 7/10 9/10 Interest exploration, choice-making, personal responsibility, knowledge of personal capacity, organization and planning, safety, self-advocacy, community exploration including transportation, establishment of satisfying routine including basic living skills and exercise Laundry, a full routine of community engagement including family and social circles

Decline

The OSA and MOHOST revealed problems with cooking, home management, shopping, transportation, laundry, community involvement, and development of routines in a new living arrangement. The client readily identified strengths and resources but required some encouragement to identify and clarify potential barriers. A common desire in his narrative was to re-capture the lifestyle he had prior to the illnesses that led to nursing home care. While generally optimistic about his future, he reported that it was difficult to “get motivated” because of all the immediate challenges he faced. Symbolic of those challenges was the pile of un-opened boxes in his second bedroom: “I used to be so much for cleanliness, very fastidious. Now I just walk past that room and I feel disgusted.” He planned to ask for help from family members who lived nearby. The client reported some fatigue throughout the day and occasional low back pain. He used a standard walker or a power wheelchair around his home. Strength was decreased due to generalized weakness, but transfers were conducted gracefully and safely when not fatigued. Initial goals were oriented to development of personally defined occupations of daily living needed by a person in transition from dependence in a nursing facility to sudden independence. Goals included increased proficiency in laundry, cooking, grocery shopping, organization of the home with a daily routine, and community involvement. It was predicted that success in practical occupations would lead to enhanced volition, leading in turn to greater success with everyday occupational performances. In the later stages of therapy, increased skill in self-advocacy became an important goal. Therapeutic Occupational Forms Given his goals, synthesized occupational forms for the client in the first few sessions involved cooking, taking out the garbage, sorting laundry, and simple housecleaning. To ensure early success and to facilitate trust, the first author participated actively and provided suggestions and encouragement. After successful


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performance with minimal to moderate guidance, the client attributed his prior low self-efficacy in these occupations to a lack of opportunity in the nursing home years. At this point, he was in a cycle of success, with associated increases in personal causation. The first author arranged for proper installation of bathroom grab bars and a showerhead supplied by a community center. In the assembly of the tub transfer bench, the client took an active role in problem solving jointly with the first author. The first author stressed bathroom safety and falls prevention. The client initiated the idea of practicing getting into and out of the tub, and the first author provided corrective feedback. The next focus was the disposition of the boxes of personal items that cluttered his second bedroom and that fostered a belief in his helplessness. The first author and the client worked together physically to unpack the client’s computer equipment and to set it up in the client’s living room, with the client encouraged to design the computer setup according to his unique motoric needs and preferences. Assuming less of a physical role in the unpacking of other boxes, the first author facilitated the client’s supervision of a volunteer who did much of the manual work. For example, the first author asked the client to figure out where boxed items should go in his new apartment. Rather than directing the unpacking, the first author left the client and the volunteer to work out problems as they arose. His new apartment was an evolving occupational form that appropriately challenged problem solving, planning, organization, and time management. The first author employed a similar strategy fostering autonomy and selfadvocacy in the client’s interactions with a pharmacy and with a home health care agency. After the first author and the client engaged in problem solving, the client independently telephoned the pharmacy to obtain needed re-fills of prescriptions. The first author and the client discussed a home health aide’s unresponsiveness, and the client showed a new assertiveness in calling the home health care agency to request a different aide. Attaining food stamps provided both another opportunity for self-advocacy and a joint excursion into the community. The first author encouraged the client to call the food stamp office and complete the application in advance. After mutual problem solving, the client then investigated the public bus route and packed a bag. The first author accompanied the client on the bus to the office and back. The journey provided a spontaneous opportunity to talk about the dangers of cigarette smoking and poor diet, particularly in the presence of HIV and powerful medications. The client reported that he appreciated hearing the reasons for health habits as opposed to simply being told what to do, and the first author urged the client to get into the habit of asking professionals their reasons for their prescriptions. To promote instrumental and leisure occupations in the community, the first author accompanied the client to the local supermarket and, on another occasion, to a restaurant within range of the power wheelchair. During these outings, the first author advised the client concerning wheelchair safety, transportation of goods, and wheelchair battery maintenance. The first author and the client also agreed that he would plan and complete a trip to a mall-based movie theatre, including calling the bus service and navigating the mall to find ramps, elevators, and accessible


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bathrooms. The first author accompanied him on this outing for emotional support but allowed the client to anticipate and solve problems independently.


Outcomes and Follow-up Please see Table 2 for a summary of measured outcomes. Overall this client showed progress in many self-identified occupations, and in volition, habituation, and capacities as conceptualized in MOHO. Although he showed progress, he did not give himself the highest possible scores on the OSA or the overall SIGA. Specific SIGA ratings for grocery shopping, cooking, housekeeping, and development of a satisfying daily routine improved to high levels in comparison to those at admission, but he reported little change in his ability to do laundry and participate in the community. He had explored the community but had not fully integrated community-based occupations into routines. While recognizing his ongoing challenges, he reported, “I feel like I can just go do things again. I can just go get out on my own and live my life and I’ll be OK.” The first author recommended that he plan for and accept physical assistance in certain occupations such as laundry, while conserving energy for more highly valued occupations. The overarching recommendation at discharge was to continue to build on his emerging skills in self-advocacy both with health care providers and in the broader community. Two weeks later in a brief follow-up home visit, the client reported success in the approval of his application for food stamps and in switching home health services to an agency promising to be client-centered. He also reported that he had asserted himself adaptively by declining to lend funds to a seemingly manipulative neighbor. “I just feel like I have the nerve to look out for myself, you know, and be more forward with people if I have to. I think it’s good. I’m doing good.”

CLIENT #3 Initial Evaluation and Goal Setting See Table 3 for background information. The client was receiving social work and counseling services, and she attended local HIV/AIDS support groups when not overly fatigued or busy with childcare. This client was a clear communicator, though somewhat timid initially. She expressed a strong sense of personal responsibility and meaning in her role as mother to a five-year-old daughter who was HIVnegative. The OSA and MOHOST revealed problems with energy level (particularly later in the day), childcare (including play), home management, pain management (headaches), productivity (self-defined as creative writing), and personal causation. The client reported feeling a lack of control over much of her life, with inconsistent living arrangements including her grandparents’ home, an apartment occasionally shared with her sister who she said had a history of substance abuse, and the apartment of the her daughter’s father. When staying with her daughter’s father, she reported feeling pressured to clean up after her daughter, even when lacking energy. When staying with her grandparents, she often became the default caretaker

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TABLE 3. Brief Profile of Client #3 Single Black female, self-identifies as heterosexual, aged 28, residing with five-year-old daughter in three different residences in improvised ways HIV positive 8 years, fatigue, anxiety, major depressive disorder, fibromyalgia, generalized pain, obesity, migraines, history of right radial fracture MOHOST-identified strengths: Self-appraisal of ability, verbal and non-verbal communication, mobility and coordination, personal responsibility Six home-based occupational therapy sessions and one telephone follow-up Concurrent events: Several changes of residence within a short time period Commencement of therapy


OSA Competence Overall SIGA Progress in goals

Little/No Change

Termination of therapy

49 53 a.m.: 6 a.m.: 8 p.m.: 2 p.m.: 4 Energy conservation leading to enhanced performance in instrumental occupations, parenting, and creative writing; increased sense of capacities; establishment of a new home Inconsistency in health appointments, underlying fatigue and depression to be coped with

Decline

of her active nephew. She said she might have access to a fourth option, a new apartment, but she could not give a schedule or a plan for moving in. The client reported having few friends, although she had acquaintances at support groups. On the OSA, she reported lacking “a place where I can be productive,” “opportunities to do the things I value and like,” and “places where I can go and enjoy myself.” She expressed regret that she had often not been able to expose her child to special opportunities (e.g., an amusement park about 50 miles from her city). The client’s strength and ROM were within functional limits, but she expressed sadness that she had lost the capacity to enjoy and succeed in basketball. When telling her narrative, she occasionally wept. According to her social worker, her daughter’s father’s failure to disclose his HIV status prior to her infection gave her a sense of betrayal, adding to her sorrow. The client valued creative expression as a force for human development and morality. However, fatigue and environmental instability inhibited her attempts at creative writing. Fatigue, sometimes accompanied by headaches, was particularly disabling in winter months and in the evenings: “. . .like a heavy weight on my shoulders bringing me down.” Because the client reported that her abilities differed so much by time of day, the client was asked to report SIGA scores separately for a.m. and p.m. Lerdel et al. (2011) have described how fatigue in persons with HIV/AIDS can vary from early in the day until later. The client’s initial goals, self-identified in a collaborative process included: cleaning, cooking, doing dishes, childcare and play occupations, leisure, and writing. Her SIGA self-ratings of her abilities to perform each of these six occupations were consistently lower for afternoon and evening performance than for morning performance. A common thread through all goals was energy conservation.


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Therapeutic Occupational Forms Given the client’s fatigue, the first author urged the client to develop an energy conservation schedule through the use of a personal planner. The first author obtained a published planner and advised the client in its use. The first author provided examples of setting priorities, designating times for each priority, and recording the plan. An early focus was on medical appointments because she often forgot about them. Next the first author urged the client to set timelines for the achievement of short-term objectives, such as setting up the kitchen so that she could prepare improved meals for herself and her daughter. When the client reported feeling overwhelmed by all her objectives, the first author urged her to record only three to five objectives per week in addition to her appointments. The first author joined with the client in a play session with the client’s daughter. The first author encouraged the client to reflect on play occupational forms compatible with fatigue and provided examples, such as drawing and telling stories. The first author made suggestions of how the client could obtain tabletop toy materials through community resources. The play session was integrated with the goal of energy conservation through use of the personal planner. For example, the daily planner provided an opportunity to reflect on her daughter’s play and nap patterns. The first author urged the client to design her day for allocation of her limited energy among child care, creative writing without distraction, rest, and instrumental occupations of daily living. The first author and the client planned to bake cupcakes together with the client’s daughter. Given the client’s history of right radial fracture, the first author provided the client with a high-friction pad for gripping utensils and opening lids. Although this assistive device functioned well, the client was not successful in baking the cupcakes because of her daughter’s high energy level, the client’s fatigue, and a lack of preparation. However, over the subsequent weeks the client persisted in pursuit of her goal of cooking and ultimately saw the connection between energy conservation techniques and cooking: “I have been cooking more, not just microwaving things out of the box, and trying to do my best to follow my schedule. Sometimes I forget to write it down like I’m supposed to, but really I’ve been doing pretty good at keeping up with everything.” In each session and sometimes by telephone, the first author and the client discussed the client’s independent use of the planner since the prior session. Sometimes the client initiated this discussion. Was the energy conservation schedule helping her achieve her goals? Should changes be made in the schedule? The client reported that she sometimes forgot to use the planner but that it was helpful both in terms of remembering appointments and conserving energy. The client’s grandfather expressed an interest in helping the client by reminding her of energy conservation recommendations. However, the first author noticed that the client sometimes resisted his suggestions. The client also became less willing to share information with the first author when the grandfather was present. Having observed the client’s reactions to her grandfather, the first author re-doubled her own efforts to be accepting and truly collaborative, while observing the client carefully for any signs of resistance to her suggestions.


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Given a collaborative approach to addressing the goal of creative writing, the client was successful in creating a computer workspace facilitating proper positioning, joint protection, pain reduction, and fatigue reduction. However, she was unsuccessful in maintaining the workspace because she continued to move among the three residences and because other residents sometimes altered her equipment. The first author urged the client to discuss her need for her own space and autonomy with those with whom she lived. Moreover, the instability was discussed frequently during sessions as an obstacle to the energy conservation schedule and therefore a threat to all her goals. The first author repeatedly recommended that the client establish a stable home base. The first author reasoned with the client by pointing out the problems that typically arose when she and her daughter moved back and forth to various residences. For example, residing at her sister’s home or sometimes her grandmother’s home often led to demands for help and attention from others. The first author cited other examples in showing the client that energy conservation and pursuit of valued occupations such as writing depend on a stable, predictable environment. As with Client #1, there were problems in scheduling appointments. Sometimes she did not return telephone calls, cancelled appointments, forgot appointments unless reminded, or did not know where she would be living at the time of the appointment. These problems seemed to be due to environmental chaos, fatigue, and self-defeating habits, but she reported that her personal planner had helped her to improve attendance to appointments. Prior to the sixth and final occupational therapy session, the client successfully moved into her own home with her daughter and began the process of transitioning and settling in. She reported that occupational therapy discussions concerning the relationships between environmental consistency and energy conservation contributed to her “finally getting motivated to go ahead and get us out of that situation and into our own place.” Outcomes and Follow-up Given enhanced energy and endurance, at discharge the client reported improvements via the SIGA in self-identified instrumental occupations of daily living, childcare, and leisure. She also reported enhanced skill in prioritizing her occupations in such a way as to match her emerging perception of actual capacities. Environmental scores greatly improved on the MOHOST at discharge, primarily because the client had moved into her new home. A stable home environment provides the necessary context for many of the techniques of energy conservation, such as efficient sequencing of sub-occupations by location of objects. The client credited occupational therapy for helping her to see the connections between a stable home, energy conservation, and completion of valued occupations. The client credited the personal planner and schedule making with helping her to attain increased insight into the relationships between fatigue and valued occupations. She reported feeling “more calm, awake, and not so crazy.” She said she experienced enhanced control over her body and her time, whereas before she had felt helpless. The first of two recommendations was to continue following the energy conservation schedule as consistently as possible, including time for writing. The second


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recommendation was to refer to her planner regularly in order to keep her medical appointments. In a follow-up telephone call after the discharge evaluation, the client reported being completely settled into her new home with her daughter. The client stated that she was trying her best to follow her energy conservation schedule. Though she still often felt fatigue, she noticed the benefits of planning occupations ahead of time and consistency within her environment.


DISCUSSION Each of the three clients had multiple diagnoses and impairments. Each of the three clients had major problems of volition, habituation, capacities, and the lived body. Each was over-challenged by the occupational forms they encountered daily in their environments. Although the three clients were very different from each other, together they suggest the complexities and seriousness of problems of daily life as experienced by many people with HIV/AIDS. The occupational therapist who attempts to enter a complex and troubled life must show confidence that an occupation-based approach can sometimes spark a dynamic re-organization for enhanced quality of life, but also must recognize that many factors can inhibit the therapeutic process. A comparison of the overall efficacy of occupational therapy for the three clients suggests that Client #1 showed little positive change or perhaps experienced a decline, whereas Client #2 and Client #3 showed moderate to major changes in positive directions. At the onset of therapy, Client #1 presented with the most serious problems of the three. Although he had more mobility in the lower extremities than Client #2 and although he had a more stable home than Client #3, all the subsystems of his body had been damaged by 28 years of exposure to the virus and by side effects of medications. He also had to cope with a troubled personal history and severe psychiatric disorders. Himelhoch et al. (2004) stated that persons with HIV who have neuropsychiatric disorders, common in this population and as seen in Client #1, are often inconsistent participants in treatment regimens. However, the authors believe that occupational therapy and other health services should be oriented to his cycles of outreach and receptivity, subsequent withdrawal in the face of setbacks (some of which are the result of overestimation of his abilities), and gradual return to outreach and receptivity. Therapy oriented to only part of a phase of a single cycle can address certain goals, such as safety and exercise routines, but mainly serves as an evaluation forming the basis for an action plan to be implemented in the receptivity phases of subsequent cycles. In the interim, telephone contacts, as tolerated by the client, can monitor safety, status of therapeutic goals addressed in the past, and readiness. As Kielhofner et al. (2008b) have maintained in their descriptions of community-based practice, an occupational therapist needs to see oneself as entering the complex, lifelong narrative consisting of phases. Clients #2 and 3 were similar in that their home environments were problematic. Arling et al. (2010) have described the typical problems encountered by people who leave nursing homes, where passivity is expected, to live in apartments, where independence is expected. The argument can be made that occupational therapy in the


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new home should be a routine expectation. Client #2’s case shows both the vulnerability and the potential of a man with unopened boxes, literally and figuratively. In contrast, Client #3’s multiple residences can be thought of as a lack of a true home. The focus on energy conservation strategies definitely helped her in everyday occupations. We do not mean to claim that occupational therapy was the sole factor tipping the balance toward her moving into her own apartment and making a home for herself and her daughter. However, she did report that her reflections concerning an energy conservation schedule helped her make the transition. Case #3 also shows some of the special problems of women with HIV who have children. Concepts within the Model of Human Occupation and its assessments were especially relevant to all three cases. In particular, MOHO’s focus on volition was apt because all three clients doubted their abilities to overcome the many internal and external problems they faced. The client-centered MOHO assessments supplemented by the Self-Identified Goals Assessment emphasized strengths as well as problems, and also led directly to observable goals that were personally meaningful to each client. Validated success in hands-on occupations strengthens volition, leading to future successes and an enhanced awareness of strengths as well as limitations. This dynamic is also described in the Conceptual Framework for Therapeutic Occupation, which posits that the essential act of the occupational therapist is to synthesize occupational forms that are meaningful and purposeful, leading to successful occupational performances and positive adaptations. We argue that community-based occupational therapy is a needed service for persons with HIV/AIDS. Occupational therapists address problems of daily living, whether associated with orthopedics, neurology, psychiatry, infectious disease, or other medical categories. Occupational therapists have specific skills in energy conservation, pain management, time management, and adaptive equipment use, which are often needed in persons with HIV/AIDS, as demonstrated in the three cases. Occupational therapists also have expertise in fall prevention, exploration of leisure interests, and work readiness, all of which are relevant to the lives of many community-dwelling persons with HIV/AIDS. The hands-on, let’s-try-it-togetherand-see approach of occupational therapy is especially important when dealing with persons who are unsure of their own capacities. The home and larger community are ideal sites for occupational therapy because the therapist can see the actual environment (the broken tub seat, the unopened boxes, or the active child), and because the occupational forms are naturalistic, as opposed to the simulations frequently necessary in institution-based rehabilitation. These three cases illustrate some of the potentials for community-based occupational therapy as well as some of the challenges arising when working with this important population.

ACKNOWLEDGEMENTS We thank the clients for their participation, and for their willingness to share life’s triumphs and struggles so candidly. We also thank the interdisciplinary staff of the Ryan White Program at the University of Toledo Medical Center. These case


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studies were completed in memory of Dr. Gary Kielhofner, for his numerous contributions to theory and practice and for his work with individuals with HIV/AIDS. Declaration of interest: The authors report no conflict of interest. The authors alone are responsible for the content and writing of this paper.


ABOUT THE AUTHORS Alexis N. Misko, OTD, OTR/L, at the time of completion of these case studies, was a student in the Occupational Therapy Doctorate Program, Department of Rehabilitation Sciences, The University of Toledo, Toledo, Ohio, USA. At the time of publication she was Occupational Therapist, Acute Rehabilitation Unit, Springfield Regional Medical Center, Springfield, Ohio, USA. David L. Nelson, Ph.D., OTR/L, FAOTA, is Professor Emeritus, Program in Occupational Therapy, Department of Rehabilitation Sciences, The University of Toledo, Toledo, Ohio, USA. Joan M. Duggan, MD, FACP, AAHIVS, is Professor of Medicine, Physiology, Pharmacology, Metabolism, & Cardiovascular Science and Medical Microbiology and Immunology, Division of Infectious Diseases, The University of Toledo Health Science Campus, Toledo, Ohio, USA. REFERENCES Arling G, Kane RL, Cooke V, & Lewis T. (2010). Targeting residents for transitions from nursing home to community. Health Services Research, 45, 691–711. Baron K, Kielhofner G, Iyenger A, Goldhammer V, & Wolenski J. (2006). The occupational self assessment (OSA). Version 2.2. Chicago, IL: University of Illinois at Chicago. Barroso J, & Voss JG. (2013). Fatigue in HIV and AIDS: An analysis of evidence. Journal of the Association of Nurses AIDS Care, 24(1 Suppl), S5–S14. Bedell G. (2000). Daily life for eight urban gay men with HIV/AIDS. The American Journal of Occupational Therapy, 54, 197–206. Braveman B, Kielhofner G, Albrecht G, & Helfrich C. (2006). Occupational identity, occupational competence, and occupational settings (environment): Influences on return to work in men living with HIV/AIDS. Work, 27, 267–276. Braveman B, & Suarez-Balcazar Y. (2009). Social justice and resource utilization in a communitybased organization: A case illustration of the role of the occupational therapist. The American Journal of Occupational Therapy, 63, 13–23. Center for Disease Control. (2010). HIV in the United States [Fact sheet]. Retrieved from http://www.cdc.gov/hiv/default.htm Gonzalez A, Zvolensky MJ, Parent J, Grover KW, & Hickey M. (2012). HIV symptom distress and anxiety sensitivity in relation to panic, social anxiety, and depression symptoms among HIV-positive adults. AIDS Patient Care and STDs, 26, 1–9. Himelhoch S, Moore RD, Treisman G, & Gebo KA. (2004). Does the presence of a current psychiatric disorder in AIDS patients affect the initiation of antiretroviral treatment and duration of therapy? Journal of Acquired Immune Deficiency Syndromes, 37, 1457–1463. Kielhofner G. (Ed.). (2008). Model of human occupation: Theory and application (4th ed.). Philadelphia, PA: Lippincott, Williams, & Wilkins. Kielhofner G, Braveman B, Finlayson M, Paul-Ward A, Goldbaum L, & Goldstein K. (2004). Outcomes of a vocational program for persons with HIV/AIDS. The American Journal of Occupational Therapy, 58, 64–72. Kielhofner G, Braveman B, Fogg, L, & Levin M. (2008a). A controlled study of services to enhance productive participation among people with HIV/AIDS. The American Journal of Occupational Therapy, 62, 36–45.


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Psychosocial responses among individuals with human immunodeficiency virus infection.

Use of zidovudine following occupational exposure to human immunodeficiency virus.

Zidovudine after occupational exposure to the human immunodeficiency virus.

Current status of therapy for human immunodeficiency virus type 1.

Risk of echocardiographic pulmonary hypertension in individuals with human immunodeficiency virus-hepatitis C virus coinfection.

Mycobacterial cervicofacial lymphadenitis in human immunodeficiency virus-infected individuals after antiretroviral therapy initiation.

Hepatitis C virus infection in individuals with or without human immunodeficiency virus type 1 infection.

Collaborative drug therapy management: case studies of three community-based models of care.

Occupational therapy in the community.

Occupational therapy in the community.

Physician breach of patient confidentiality among individuals with human immunodeficiency virus (HIV) infection: patterns of decision.

Selecting an antiretroviral regimen for human immunodeficiency virus postexposure prophylaxis in the occupational setting.

Serum enhancement of human immunodeficiency virus (HIV) infection correlates with disease in HIV-infected individuals.

Profound CD4+ T lymphocytopenia in human immunodeficiency virus negative individuals, improved with anti-human herpes virus treatment.

Isolation of human immunodeficiency virus type 1 from human epidermis: virus replication and transmission studies.

Risk for occupational transmission of human immunodeficiency virus type 1 (HIV-1) associated with clinical exposures. A prospective evaluation.

Perinatally infected adolescents living with human immunodeficiency virus (perinatally human immunodeficiency virus).

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Community engagement: outcomes for occupational therapy students, faculty and clients.

Human papillomavirus-associated anogenital neoplasia and other solid tumors in human immunodeficiency virus-infected individuals.

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acquired immunodeficiency syndrome in era of highly active antiretroviral therapy.

Highly efficient neutralization by plasma antibodies from human immunodeficiency virus type-1 infected individuals on antiretroviral drug therapy.

Poncet's disease in human immunodeficiency virus: a case report.