J Occup Rehabil DOI 10.1007/s10926-014-9519-4

Factors Related to Participation in Paid Work After Organ Transplantation: Perceptions of Kidney Transplant Recipients Nazanin Nour • Carol S. Heck • Heather Ross

 Springer Science+Business Media New York 2014

Abstract Purpose Following kidney transplantation, recipients often have difficulty returning to meaningful occupations, including paid employment. The purpose of the current study was to describe the sociodemographic profile of kidney transplant recipients at a major Canadian Transplant Centre and to identify factors perceived to affect participation in paid work post-transplant. Methods Of the 530 kidney recipients who had received a kidney transplant at our facility between 2003 and 2008, 144 recipients were randomly selected, and mailed a questionnaire. Results There were 60 returned questionnaires (41.7 % response rate). The average age of responders was 49.4 years and the majority were male (68.3 %). While the rate of employment decreased significantly (p = 0.00) from 68.3 % pre- to 38.3 % post-transplant, retirement rates increased

N. Nour (&) Toronto General Hospital, University Health Network, 4EB-316200 Elizabeth Street, Toronto, ON M2G 2C4, Canada e-mail: [email protected] N. Nour Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada C. S. Heck Toronto General Hospital, University Health Network, 4E - 306, 200 Elizabeth Street, Toronto, ON M2G 2C4, Canada e-mail: [email protected] C. S. Heck Department of Physical Therapy, University of Toronto, Toronto, ON, Canada H. Ross Toronto General Hospital, University Health Network, NCSB 11C, 1203; 585 University Ave, Toronto, ON M5G 2N2, Canada e-mail: [email protected]

significantly (p = 0.00) from 8.3 % pre- to 18.3 % posttransplant. The responders, who were not working posttransplant, more likely lived alone (p = 0.05), had a lower level of education (p = 0.02), and had lower perceived emotional (p = 0.00) and physical (p = 0.00) health status compared to those who returned to work post-transplant. Gender, donor type, age, and post-transplant complications did not differ (p [ 0.05) between the working and not working groups. Both person- and work-related factors impacted on return to paid work post-transplant. Most responders (working and not working) reported feeling emotionally and physically ready to work after their transplant. Work-related enablers included positive employer attitude towards medical history and employer agreement that recipients could take time off for medical appointments. Of those returning to work, the nature of their jobs changed from heavy physical demands to sedentary work. There was a 20.0 % increase in reliance on government disability insurance post-transplant. Responders recommended the development of a rehabilitation program focused on working and consulting with transplant recipients’ employers to further enable successful reintegration into the workplace after transplantation. Conclusions The ability to return to paid work after kidney transplant is a complex phenomenon, likely impacted by a combination of person- and workrelated factors, which contributed to how individuals perceived their abilities to attain or return to paid work. It is important that in facilitating renal transplant recipients to resume valued life occupations such as paid work, the dynamic interactions between personals values, perception of one’s abilities, skills, job requirements and employer characteristics be considered. Keywords Renal transplantation employment
Paid work
Perceived factors
Disability
Motivation

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Introduction While the first successful kidney transplant in Canada was completed almost 55 years ago [1], transplantation is now a routine form of renal replacement therapy. In 2011, the 25 active kidney transplant programs in Canada performed 1,065 adult kidney-only (first grafts) transplants [2]. Optimizing outcomes beyond survival, such as quality of life and participation in paid work have increasingly gained the attention of health professionals working with renal transplant recipients [3–6]. In light of limited organ availability and high costs involved, the health care system faces the challenge of the indirect costs related to loss of productivity of renal transplant patients, particularly since most are at the working ages of 18–64 years at the time of their transplant [7]. In addition to being a source of income, participation in paid work has been shown to contribute to graft and renal recipient survival [8]. However, working after renal transplantation constitutes a major challenge [5, 7]. Transplant recipients often continue to live with the underlying chronic illness(es) that were the primary need for transplantation or develop comorbidities such as diabetes, cancer, or osteoporosis, which may pose limitations on ability to resume important life roles [5]. The adverse effects of long-term usage of immunosuppressants, and the possibility of episodes of rejection and hospitalization may impact on an individual’s physical and emotional wellbeing, quality of life and ability to participate in activities such as employment [5]. Reporting on employment rates and identification of factors related to working after renal transplant vary greatly across different studies [3, 6, 9–16], depending on how ‘‘work’’ was defined, the size of the sample studied, the geographic location of the study, the time post-transplant when data collection occurred, and the year when the study was conducted. In addition, surgical techniques and pharmaceuticals have changed over the time since these studies have been conducted. All of these variables make comparisons between studies challenging. When examining the relationships between demographic variables and the rates of participation in paid work following renal transplantation, a higher likelihood of working post-transplant was related to younger age (being younger than 50 years at the time of transplant) [9, 12, 15, 16], gender (higher employment rates in males) [9, 12, 15, 16], higher level of education [3, 9, 16], and absence of comorbidities (e.g. higher working rate if recipients did not have diabetes afterwards) [6, 10, 12]. Most studies indicated that the primary predictor of working post-transplant was pretransplant employment [9, 10, 13, 16, 17]. The first year following transplant surgery was determined to be a key window of opportunity to return to paid work [13]. The not working recipients have reported worse renal function and

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more limitations in physical functioning than their cohorts who returned to work post-transplant [6, 10]. Other studies have shown that severe fatigue, not receiving disability benefits and the side effects of anti-rejection medication have a negative impact on ability to work post-transplant [3, 11]. Receiving an organ from a cadaveric donor type has also been found to negatively relate to working posttransplant [3, 15, 16]. Most of the existing renal transplant literature has primarily examined objective indicators of quality of life such as pain, general health, and body mass index as they relate to working post-transplant [6, 9, 11, 12], to the exclusion of factors subjectively perceived by recipients [6]. Subjective factors, including recipients’ perceptions of physical and mental health, changes in values that relate to role prioritization and work readiness, have rarely been explored in the renal transplant literature. A few studies have reported briefly on subjective illness [13], poorer ratings of perceived physical dysfunction [14], and perceived disability [16] as negatively associated with working following renal transplantation. Perceived disability by renal transplant recipients has been identified as a considerable barrier to participation in valued roles and activities post-transplant [18]. Lack of a consistent way to define disability after renal transplantation [19], and the gap between recipient’s self-identified disability and that defined by the health system, further impact on values, self-confidence, and prioritization of roles [18, 19]. In addition, the non-transplant literature [20–25] has reported on the relevance of subjective perceptions of selfesteem, locus of control, work readiness, and illness perception on participation of ill and/or injured workers or those with chronic illness in paid work. In the dialysis population, the employed and unemployed responders with similar medical and objective health indicators varied in perception of their illness as a barrier to work [20]. The employed group perceived their illness as less disruptive and reported higher self-esteem than the unemployed group. The belief in an internal or external locus of control impacts on the extent individuals perceive events to be influenced by their own behavior. Millet and Sandberg [21] found that an internal locus of control positively correlated with working status after a period of sick leave (type of illness was not specified). Individuals with chronic illness also reported a reprioritization of personal and career goals [26]. The impact of renal transplant recipients’ perceptions of their work environment, employer support, work characteristics, and human resources practices has rarely been addressed. The literature on chronic illness and disability [24, 26, 27] has shown that factors such as suitable workplace modifications, employer support and flexible sick leave practices contribute to participation in paid work by those with chronic illness and disability.

J Occup Rehabil

The applicability of findings to the Canadian healthcare context, which is fundamentally different from other countries (United States or European countries) in which studies have been conducted, may be challenging. The purpose of the current study was therefore twofold: (1) to describe the profile of kidney transplant recipients from one major Canadian Organ Transplant Centre, and (2) to identify the person- and work-/employer-related factors that kidney transplant recipients perceived as enabling or acting as barriers to their participation in paid work.

Methods A cross-sectional research design was used in the current study. The data reported in this paper is part of a larger study, which collected data on liver, kidney and heart transplant recipients. Only the results from the renal transplant population are presented in the current paper. Questionnaire Development Definition of Terms and Assumptions In this study, work was conceptualized as paid employment, performed either on a full-time or part-time basis. To ensure that the value of other roles was not discounted, questions regarding participation in non-paid work were also included in the questionnaire. These roles included being a homemaker, student, volunteer, taking care of children/grandchildren or being retired. Theoretical Framework Used and Item Selection for Questionnaire The theoretical model of human occupation (MOHO) was used as a framework to guide the design of the questionnaire used in this study [28]. Occupations are defined as meaningful and purposeful activities in the areas of self-care, leisure and productivity. Paid work is one such occupation. A person’s three interrelated components of volition (i.e. values and interests as motivators for occupation), habituation (i.e. process by which occupation is organized into habits and roles) and performance capacity (physical and mental abilities that underlie performance in occupations) are in continuous interaction with one’s physical and social environments [28]. The MOHO encapsulates the dynamic interaction of person-related factors such as subjective perception of well-being, values and job readiness, with environmental factors such as work and employer factors, in influencing the outcome of participation in the occupation of paid work. It was felt that this theoretical framework offered a valuable perspective and comprehensively captured the

domains of interest to the research team. For these reasons, MOHO was used to guide the design of the questionnaire in the current study. The content of the questionnaire was further based on a review of the literature, and in consultation with experienced health professionals who had expertise in working with renal transplant recipients. A team of clinical experts familiar with issues pertaining to working with this population evaluated the questionnaire for content and face validity. Based on the opinion leader feedback, revisions were incorporated into the final survey prior to its administration in the study. The questionnaire consisted of four sections with 84 items in total, divided into ‘before’ (pre-) and ‘after’ (post-) transplant sections. The response choices for items in the questionnaire were categorical, nominal or ordinal. A fivepoint Likert scale ranging from Strongly Agree to Strongly Disagree, including Neutral, as options for responses, was used in the section on enablers (working responders) and barriers (for not working responders). Participants were asked to choose the answer(s) that best described them and their experience(s). The demographic information collected included age, gender, relationship status, highest level of education, source(s) of income before and after transplant (employment income, provincial disability insurance, employer disability insurance, social assistance, household income, pension benefits/retirement income), and employment status before and after transplant (e.g. paid employment: full- or part-time, homemaker, student, volunteer, caregiver e.g. taking care of children/grandchildren, retired, too sick to work, never worked, or did not work because of limited education or recently immigrated). In addition, participants were asked to indicate the nature of their work (heavy physical work/lifting needed, sedentary/desk-type/office job, work in close contact with people), how many months/years before transplant they stopped working, how long (months) they waited for their transplant, source of organ for transplant (deceased/ living donor), the disease/condition responsible for transplant, and to identify any immediate post-transplant experiences or complications. Responders rated their perceived physical and emotional health status ranging from excellent to poor [assigned numbers 1 (for excellent) to 6 (for poor) for purposes of data management only]. The working and not working groups were asked to rate their perceptions (level of agreement or disagreement) of the impact of person-related (perceived readiness, internal and external motivators, and personal skills) and work-related factors (job availability, job characteristics, and employer characteristics) as enablers or barriers to working post-transplant. The questions for the working and not working groups probed similar concepts, but identical statements were not used. The final section asked participants to choose from one or more of the four options provided in the question as to

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the types of recommendations that, in their opinion, would improve the likelihood of return to work after transplant. The types of recommendations included a rehabilitation program with a focus on return to work, transplant team consultation with previous employers, transplant team consultation with potential employers to facilitate finding a suitable job, and encouragement from the transplant team. Participants were also given an opportunity to provide additional comments or feedback in the ‘‘other’’ category of this section. Responses received in the ‘‘other’’ category were analyzed using an inductive methodology. Each member of the research team read these responses independently to generate underlying key phrases and themes. The team then used group consensus to identify and agree on common themes. Inclusion and Exclusion Criteria The inclusion criteria were: adult, first graft renal transplant recipient with transplant performed at our facility between 2003 and 2008 inclusive; had a functioning graft at the time of the study; 18–65 years old at the time of transplant; ability to read and comprehend English, and had no diagnosed cognitive impairment. Recipients were excluded if they had received a second transplant (kidney or other organ), or had a renal transplant in combination with another organ. Consent to Participate and Enrollment Participants (n = 144) were randomly chosen from the Organ Transplant Tracking Record database, a list of renal transplant recipients who had received their transplant at our facility between 2003 and 2008. In January 2010, an introductory letter along with the questionnaire was mailed to all eligible participants with a self-addressed stamped envelope for return of completed surveys. Non-responders received a second mailing of the package 1 month after the initial mailing as a reminder to complete the questionnaire. Return of the completed questionnaire indicated implied consent to participate in the research study. To ensure confidentiality, questionnaires did not contain names or identifying information. Each participant was instead assigned a three-digit number as an identification code. No financial or other incentives were offered for participation in the study or completion of the questionnaire. This study was approved by our institution’s Research Ethics Board, and complied with its guidelines. Data Management Data for the Canadian and Ontario kidney transplant recipients were retrieved from the Canadian Organ Replacement Register Annual Report [2], with the data

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from 2003 to 2008 period extracted and collated to correspond to the same time-period used in this study. Only the data for adult, kidney-only, first-graft was used, while pediatric, kidney combination transplants or re-transplants were excluded [2]. The data from completed questionnaires were manually entered into the Statistical Package for the Social Sciences (SPSS; IBM SPSS Statistics for Windows, Version 20.0, IBM Corp., Armonk, NY, 2011) for subsequent data management and analysis. Although there was some missing data (i.e. participants were allowed to leave questions blank and some responders did not answer all the questions), all submitted surveys were used in the final analysis and presented in the data summary tables. To gain a fuller understanding of the representativeness of our responder group in comparison to our total eligible study sample, a non-response analysis was conducted. Comparisons were made on some demographic characteristics between data from responders (n = 60) and non-responders (those selected to participate but chose not to participate (n = 84), and between those randomly selected (n = 144) and not selected (n = 386) for participation the study. Where appropriate frequencies and percentages were used to characterize the sample with respect to demographics. t-Tests for independent samples were used for continuous data (e.g. age), and Chi square tests were used for categorical data such as gender, donor type and primary causes of renal disease. For all statistical testing p B 0.05 denoted a statistically significant between group differences. For some data (e.g. physical and mental health status) each response choice was converted into numerical data. The extreme scale anchors (excellent and poor) were assigned values of 1 (excellent) and 6 (poor), respectively. This allowed us to calculate a mean rating for each of the health dimensions. The mean values between the working and not working groups were compared using the nonparametric Mann–Whitney U test. To determine if there were any differences between preand post-transplant responses (significance set at p B 0.05), and between responders who indicated they were working versus those who indicated not working posttransplant, t-Tests were used for numerical data, and McNemar’s tests for categorical data.

Results Sociodemographic Profile The sociodemographic profile of our facility’s kidney transplant recipients (2003–2008 inclusive) in comparison to Canadian and Ontario kidney transplant populations is presented in Table 1. The majority of responders were male, and the mean age was approximately 50 years. Similarities

J Occup Rehabil Table 1 Characteristics of kidney transplant recipients in Canada, Ontario, study site, and study population Canada (n = 5,733)

Ontario (n = 2,508)

Eligible sample study site Group (n = 530)

Selected for study (n = 144)

Not selected (n = 386)

p valuec

0.90

Selected for study Responders (n = 60)

Non responders (n = 84)

p valued

41 (68.3)

52 (61.9)

0.60

19 (31.7)

32 (38.1)

Gendera Male

63.5 %

64.8 %

337 (63.6)

93 (64.6)

244 (63.2)

Female

36.5 %

35.2 %

193 (36.4)

51 (35.4)

142 (36.8)

Age (years) Mean ± SD

52.0

54.5

50.0 ± 14.0

47.3 ± 10.8

51.4 ± 14.5

Age range

NA

NA

(14–78)

(21–64)

(14–78)

0.43

49.4 ± 10.2

46.9 ± 11.3

(21–63)

(21–63)

24 (40.0)

43 (51.2)

36 (60.0)

41 (48.8)

0.81

Source of donor organ Deceased donor

3,439 (60.0)

1,393 (55.5)

270 (50.9)

67 (46.5)

203 (52.6)

Living donor

2,294 (40.0)

1,115 (44.5)

260 (49.1)

77 (53.5)

183 (47.4)

0.62

0.09

Primary causes of end-stage renal diseaseb (n = 1,067) for 2010 Glomerulonephritis

325 (30.5)

NA

128 (24.2)

37 (25.7)

91 (23.6)

16 (26.7)

21 (25.0)

Diabetes

221 (20.7)

NA

83 (15.7)

29 (20.1)

54 (21.4)

0.77

11 (18.3)

18 (21.4)

Polycystic kidneys

124 (11.6)

NA

78 (14.7)

18 (12.5)

60 (11.9)

8 (13.3)

10 (11.9)

Hypertension

92 (8.6)

NA

108 (20.4)

23 (16.0)

86 (14.3)

11 (18.3)

12 (14.3)

0.57

NA not available a

Data presented as number (percentage in brackets, unless noted) except for Canadian and Ontario age and gender data. Age is presented as a mean of the 6 individual years (2003–2008) of data collection. Gender is only available as a percentage

b

The percentages for causes of end-stage renal disease do not add up to 100 % as only the top four causes are shown in the table

c

These p values are calculated to compare the characteristics of the randomly selected with the randomly not selected groups—p value B0.05

d

These p values are calculated to compare the characteristics of responders with non-responders—p value B0.05

in age and gender were observed in our cohort of eligible participants (n = 530) and the Canadian and Ontario transplant population. Slightly more than one-third of our responders were in the age category of 55–64 years, both at the time of renal transplantation (41.7 %), and at the time of completion of the questionnaire in our study (35.0 %) (Table 2). Source of organ donation for the majority of the Canadian renal transplant recipients was from deceased donors (60.0 %), compared to a lesser proportion of our responders (40.0 %). The primary causes of end-stage renal disease were mostly similar for our sample and the Canadian data, except a lower proportion of Canadian renal transplant recipients had hypertension. There were no significant differences for several of the demographic characteristics (age, gender, source of donor organ, cause of endstage renal disease and post-transplant issues and complication) between responders (n = 60) and non-responders (n = 84). Furthermore, there were similarities in these characteristics amongst the recipients selected to participate in the study (n = 144), our total eligible sample (n = 530), and those not selected (n = 386). Further characteristics of our responders stratified by working status post-transplant are presented in Table 2.

Most responders were living with another person and had completed some post-secondary education. Overall, a small number of our responders reported long stays in the intensive care unit, the acute hospital, the rehabilitation facility, or had multiple readmissions. In addition, over 15 % of participants reported developing posttransplant complications such as diabetes, psychological symptoms of depression and anxiety, and peripheral sensory neuropathies. At the time of completion of the questionnaire, over three quarters rated both their physical and emotional health status as at least good. There were five differences between the working and not working responders (Table 2). Those responders who were not working were more likely to be living on their own (p = 0.05), waited longer for their transplant (p = 0.05), had a lower level of education (p = 0.02), and had lower perceived physical (p = 0.00) and emotional health status (p = 0.00) than their cohorts who had returned to work post-transplant. There were no statistically significant differences between these two groups with respect to other characteristics (e.g. gender, age, donor type, post-transplant issues and complications).

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J Occup Rehabil Table 2 Characteristics of study site participants by working and not working status post-transplant Respondersa

Characteristics

Group (n = 60)

Working (n = 23)

Not working (n = 37)b

p valuec

Gender Male

41 (68.3)

17 (73.9)

24 (64.9)

0.59

Age (mean ± SD)d

49.4 ± 10.2

52.1 ± 6.2

47.8 ± 11.7

0.13

Living on own

16 (27.1)

3 (13.6)

13(35.1)

0.05

Living with others

43 (72.9)

19 (86.4)

24 (64.9)

Elementary/high school

24 (40.7)

4 (18.2)

20 (54.1)

Post-secondary education

35 (59.3)

18 (81.8)

17 (45.9)

English as first language

38 (63.3)

17 (77.3)

21 (55.3)

0.09

Other languagese

22 (36.7) 36 (60.0)

16 (69.6)

20 (54.1)

0.33

\6 months

11 (18.3)

7 (30.4)

4 (10.8)

0.05

6 months–1 year

9 (15.5)

2 (8.7)

7 (18.9)

1–2 years

10 (16.7)

5 (21.7)

5 (13.5)

2–5 years

16 (26.7)

5 (21.7)

11 (29.7)

More than 5 years

14 (23.3)

4 (17.4)

10 (27.0)

Glomerulonephritis

16 (26.7)

6 (26.1)

10 (27.0)

Diabetes

11 (18.3)

4 (17.4)

7 (18.9)

Polycystic kidneys

8 (13.3)

3 (13.0)

5 (13.5)

Hypertension

11 (18.3)

4 (17.4)

5 (13.5) 3.4 ± 1.6

Age categories

At the time of transplant Age range 21–63

At the time of completion of questionnaire Age range 24–69

20–34

6 (10.0)

4 (6.7)

35–44

12 (20.0)

9 (15.0)

45–54

17 (28.3)

17 (28.3)

55–64

25 (41.7)

21 (35.0)

C65

0

9 (15.0)

Domestic/relationship status

Highest level of education 0.02

Donor type Living donor Wait time for transplant

Causes of end-stage renal diseasef

Perceived physical health statusg (mean ± SD)

2.9 ± 1.5

2.0 ± 0.9

Excellent, very good, and good

47 (78.3)

22 (100.0)

25 (65.8)

Variable

9 (15.0)

0 (0.0)

9 (23.7)

Not good and poor

4 (6.7)

0 (0.0)

4 (10.5)

Perceived emotional health statusg (mean ± SD)

2.8 ± 1.4

1.9 ± 0.8

3.3 ± 0.1

Excellent, very good, and good

50 (83.3)

23 (100.0)

27 (73.7)

Variable

7 (11.7)

0 (0.0)

7 (18.4)

Not good and poor

3 (5.0)

0 (0.0)

3 (7.9)

0.73

0.00

0.00

Post-transplant issues/complications Long intensive care unit stay

1 (1.7)

0 (0.0)

1 (2.6)

Long hospital stay

4 (6.7)

0 (0.0)

4 (10.5)

Long rehabilitation

4 (6.7)

1 (4.5)

3 (7.9)

Multiple readmissions

3 (5.0)

0 (0.0)

3 (7.9)

Diabetes

10 (16.7)

4 (18.2)

6 (15.8)

Peripheral sensory neuropathies

11 (18.3)

3 (13.6)

8 (21.1)

Depression/anxiety

10 (16.7)

2 (9.1)

8 (21.1)

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J Occup Rehabil Table 2 continued a

Data presented as number of responders (percentage in brackets). The number of responders may be\60 as there may be missing data for some categories (i.e. not all responders answered all the questions)

b Not working category (n = 37) includes unemployed, never worked, homemaker, student, volunteer, retired, taking care of children/grandchildren, too sick to work, did not work because recently immigrated, did not work because of limited education c d

Significant group differences indicated in bold, if p value B0.05 Age refers to that at the time of completion of the questionnaire

e

Other languages were French, Italian, Thai, Tagalog, Romanian, Serbian, Vietnamese, Portuguese, Russian, Hungarian, Spanish, Punjabi, Arabic, and Tamil

f

The percentages for causes of end-stage renal disease does not add up to 100 % as only the top four causes are shown in the table

g

Responders rated their perceived physical and emotional health status on a scale choosing from excellent to poor. For data analysis, numerical values were assigned to the rating categories with excellent = 1, and poor = 6. Therefore the higher the score is, the poorer the perceived health rating. Data from excellent, very good and good were added together and collapsed into one category as were the responses for not good and poor

Employment Status, Nature of Work, and Sources of Income Pre- and Post-transplant In Table 3, further data regarding characteristics of the responders are presented, pre- and post-transplant. There were changes in employment status, nature of work and source(s) of income from before (pre-) to after (post-) renal transplant surgery. There was a significant decrease (p = 0.00) in the number of responders who worked either full- or part-time post-transplant, and a significant increase (p = 0.00) in the number of retirees post-transplant. Approximately one-quarter indicated they were too ill to work due to disability prior to the transplant. Participation in other unpaid productive roles (e.g. homemaker, caregiver, student or volunteer) decreased from pre- to post-transplant. Compared to the pre-transplant profile, there was no statistically significant change (p = 0.07) in the number of responders who worked in close contact (i.e. face-to-face) with people post-transplant. Of those working before the transplant, the majority worked until their surgery, with almost equal rates of participation in physically demanding and sedentary jobs. Participation in jobs involving physically demanding work significantly decreased (p = 0.02) from pre- to posttransplant and participation in sedentary work increased post-transplant. While more than half of the recipients worked until their transplant surgery, almost one-quarter stopped work at least 2 years before their transplant. All responders working post-transplant returned to or found work within 1 year of their surgery. While fewer individuals noted employment as a source of income post-transplant, the rate of those who received employer-based disability insurance also decreased posttransplant. Following transplant, one-fifth of responders were on the provincial disability insurance, compared to none before the transplant, a statistically significant difference (p = 0.00). Reliance on household income and social assistance remained unchanged from pre- to post-transplant (see Table 3 for more details on sources of income).

Enablers or Barriers to Paid Work Post-transplant Our participants highlighted the extent they found personrelated factors (perceived readiness, external and internal sources of motivation, and personal skills) and work-related factors (job availability, job characteristics, and employer characteristics) as contributing to return to work following transplantation. The post-transplant working responders (number of responders ranging from 18 to 23 for the various statements) rated their perceptions of the extent the factors enabled them to return to work, and the not working responders (number of responders ranging from 27 to 30 for the various statements) rated the extent the factors were considered as barriers to working post-transplant. Data from those statements are presented in Table 4. Perceived Readiness Nearly all the working responders perceived being emotionally, physically, and medically ready to work. Conversely, over half of the not working responders identified that they did not feel emotional, physical, and medical readiness or ability to return to work after transplant. The majority of working responders ‘‘agreed’’ or ‘‘strongly agreed’’ that medication side effects did not interfere with their ability to work while just over one-third of not working responders ‘‘agreed’’ or ‘‘strongly agreed’’ that medication side effects interfered with their ability to work. External and Internal Motivators The majority of the working responders agreed that the need for income from work was a motivator towards participation in paid work. Over two-thirds of the not working responders (70.4 %) disagreed that fearing the loss of disability benefits contributed to not working post-transplant, while 17.9 % remained neutral, and 10.7 % agreed that fear of losing disability benefits was a barrier to working (data for neutral and agreed not shown in

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J Occup Rehabil Table 3 Participants’ employment status, nature of work, and sources of income pre- and post-transplant

Pre-transplanta

Post-transplanta

Employment statusb

n = 60

n = 60

Full-time

33 (55.0)

17 (28.3)

Part-time

8 (13.3)

6 (10.0)

Never worked

0 (0.0)

0 (0.0)

Other rolesc

18 (30.0)

11 (18.3)

Retired

5 (8.3)

11(18.3)

Unemployed/too sick to work due to disability

14 (23.3)

26 (43.3)

Nature of workb

n = 41

n = 23

Heavy physical work/lifting needed

16 (39.1)

6 (26.1)

Sedentary/desk-type/office job

15(36.6)

12 (52.2)

Work in close contact with people

27 (65.9)

14 (60.9)

Other

8 (19.5)

4 (17.4)

Source(s) of incomeb

n = 60

n = 60

Employment (full- and part-time)

41 (68.3)

23 (38.3)

Provincial disability insurance

0 (0.0)

12 (20.0)

Role productivity

Employer disability insurance

12 (20.0)

7 (11.7)

a

Data presented as number of responders (% in brackets)

Social assistance, household income

13 (21.7)

15 (25.0)

b

Pension benefits; retirement income

14 (23.3)

18 (30.0)

Other

10 (16.7)

11 (18.3)

Time worked relative to transplant

Stopped work pretransplant n = 40

Time to find work posttransplant n = 23

Worked until transplant

26 (61.9)

Not applicable

\6 months

3 (7.1)

17 (74.0)

Totals may exceed 100 %, as participants were able to choose more than one possible answer

c

Other roles include homemaker, student, volunteer, taking care of children/ grandchildren

d

Significant group differences indicated in bold, if p value B0.05 e

The p value for employment status includes full- and parttime employment

6 months–1 year

1 (2.4)

6 (26.0)

1–2 years

0 (0.0)

0 (0.0)

2–5 years More than 5 years

5 (11.9) 5 (11.9)

0 (0.0) 0 (0.0)

Table 4). Most of the working group (60.9 %) stated they received encouragement from the transplant team to work post-transplant, whereas more than half of the not working responders disagreed that their decision not to work, was related to being financially secure (53.6 %), or to lack of encouragement from the transplant team (55.6 %). In rating the internally-driven motivators (this data not shown in Table 4), the majority of the working group indicated that work provided them with an increased sense of confidence (86.3 %) and a sense of structure, purpose and meaning (83.3 %), and relieved boredom (95.5 %). In comparison, the majority of the not working group (59.3 %) disagreed that being unemployed reflected their ‘‘wish’’ to not work. About one-third (31.0 %) agreed that a change in priorities post-transplant was a reason for their not working behavior. More than half (55.6 %) disagreed that they decided to take early retirement, even though the number of the retirees doubled post-transplant.

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p valued

0.00e

0.02

0.00

0.01

Personal Skills Amongst the working responders, most (85.0 %) identified that having work experience before transplant made it easier to return to work. Paradoxically, the majority (67.9 %) of the not working responders disagreed that not working before the transplant contributed to not working after. The need to pursue formal education to enhance skills (60.7 % disagreed), write a resume or lack of interview skills (68.0 % disagreed), were not identified as barriers for the not working group (this data not shown Table 4). Job Availability The majority of the working responders (87.0 %) indicated they were able to return to their previous jobs. Just over half (51.9 %) of the not working group agreed that they were not able to return to the job they had before the transplant. In

J Occup Rehabil Table 4 Enablers to return to work for the working participants and barriers to return to work for the not working participants post-transplant Working (n)a

b

Not working (n)a

b

Perceived readiness

% SAA

Perceived readiness

% SAA

Emotionally I felt ready to work (n = 22)

95.5

Emotionally I did not feel ready to work (n = 28)

64.3

Medically I was able to return to work (n = 22)

91.3

Medically I was not able to return to work (n = 30)

56.6

Medication side effects didn’t interfere with work (n = 23)

90.9

Medication side effects interfered with work (n = 29)

37.9 75.0

Physically I felt ready to work (n = 22)

86.4

Physically I did not feel ready to work (n = 28)

External and internal motivators

% SAA

External and internal motivators

% SDD

I needed the income from work (n = 22)

81.8

Financially I did not need to work (n = 28)

53.6

My doctor, nurse, or therapist encouraged me to work (n = 23)

60.9

My doctor/nurse/therapist did not encourage work (n = 27)

55.6

I was sure I wouldn’t lose disability benefits if I worked (n = 18)

33.3

I feared losing disability benefits if I worked (n = 27)

70.4

Personal skills Work experience pre-transplant made return easier (n = 20)

% SAA 85.0

Personal skills Didn’t work pre-transplant, so difficult to start (n = 28)

% SDD 67.9

I returned to school and found my job after that (n = 19)

5.3

I went back to school to learn new skills (n = 28)

60.7

Job availability

% SAA

Job availability

% SAA

Previous job was available/waiting posttransplant (n = 23)

87.0

I was not able to return same job post-transplant (n = 27)

51.9

The economic conditions were good to find work (n = 19)

52.6

Finding work difficult due to economic conditions (n = 25)

24.0

Job characteristics

% SAA

Job characteristics

% SAA

My current job meets my transplantrelated needs e.g. desk-type, sedentary, less public contact exposure (n = 20)

40.0

My pre-transplant work conditions were not suitable for me post-transplant (n = 25)

44.0

I received job modifications for my disability so I continue to work at the same job/company (n = 18)

22.2

I needed changes to my job because of my disabilities (n = 26)

26.9

Employer characteristics

% SAA

Employer characteristics

% SDD

My employer was ok with me taking time off work to get to medical appointments (n = 21)

81.0

I returned to work briefly, but stopped soon after because my employer feared my medical followups would take time away from work (n = 25)

64.0

I could communicate my needs with my employer (n = 21)

52.4

Unable to communicate needs with my employer (n = 24)

66.7

a

The total number of responses to each statement, ranging from disagreement to agreement and neutral, is indicated in front of each statement Responders rated the strength of agreement or disagreement with the statements. Values in the table represent either the percentage of responders who strongly agreed and agreed combined (SAA) or percentage of responders who strongly disagreed and disagreed combined (SDD)

b

addition, over half of the working responders agreed that the economic conditions were favorable to find work. Approximately, one-quarter of the not working responders noted that finding work was difficult due to economic conditions. Job Characteristics Only about one-quarter of the working and not working groups agreed that job modifications were made or were needed for continued employment. Similarly, both groups of

responders identified that job characteristics can be enablers or barriers to paid work post-transplant. The working group agreed (40.0 %) that job characteristics that meet transplantrelated needs such as desk-type, sedentary, and lesser public contact were enablers, and the not working group identified (44.0 %) that the pre-transplant work conditions were not suitable for working post-transplant. Unsuitable work conditions, in this question, included extremes of weather, physically demanding work, potential for infections in highly public environments and industrial pollutions.

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J Occup Rehabil

Employer Characteristics The majority (81.0 %) of the working group indicated that their employer was supportive of them taking time off to accommodate for medical appointments. Moreover, over half of those who had returned to work felt they could communicate their needs to employers. In contrast, approximately two-thirds of the not working group disagreed that inability to take time off work for medical appointments was a barrier to working. While positive employee attitude was perceived to be an enabler by the working group (76.2 %), the not working responders largely disagreed (56.0 %) that hiring discrimination based on disability or less supportive employer attitude were barriers in their decision to not return to work (this data not shown in Table 4). Recommendations to Improve Employment Posttransplant Both the working and not working responders chose amongst four recommendations presented in the study questionnaire to improve opportunities for return to work post-transplant. Just over half (57.1 %) chose a rehabilitation program with a focus on return to work, and just over one-quarter (28.6 %) selected transplant team consultation with previous employers. Another quarter (26.5 %) wished that the transplant team consult with potential employers to facilitate finding a suitable job, and 38.8 % recommended further encouragement from the transplant team. Four themes emerged from the analysis of the ‘‘other’’ comments: (1) employer factors, (2) volition (internal and external motivating factors), (3) habituation, and (4) developing rehabilitation programs with a focus on work. The following quotations reflect the themes from the comments in the open text boxes. The employer factors were reflected by comments such as ‘‘any time taken off medical visits may not be looked upon as a good employee’’ or ‘‘the whole issue of disability is a major consideration that really is not understood…nor is the system prepared to deal with it…lack of resources…and accommodations’’. Quotations demonstrating importance of volition included ‘‘the patient must make the decision and be motivated to return to work’’ and ‘‘I think that after a life changing experience that I should choose if I want to spend whatever time I have left doing what’s best for me’’. Habituation was highlighted by indicating the relevance of ‘‘creating a structure that should manage the life of the patient’’, and ‘‘phase into the normal duties and responsibilities’’. The participants also expressed interest in a rehabilitation program with a focus on work with comments such as ‘‘I have tried to look for a job…I was struck in between bureaucracy…it would be great if there is another channel to put me in a workforce…for

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retraining…special recipients’’.

training

program

for

transplant

Discussion The current study described the profile of renal transplant recipients at a major Canadian transplant center and identified the person- and work-/employer-related factors that renal transplant recipients perceive as enabling or acting as barriers to their participation in paid work. The study sample was generally representative of the national (Canadian), and provincial (Ontario) renal transplant population, as well as similar to those reported in the literature in terms of age and gender [3, 10, 11, 15, 17, 29]. Even though age was not found to be a significant factor in working post-transplant, the increase in the numbers of individuals retiring post-transplant may indicate a personal reprioritization of career and personal goals, with a preference towards ‘‘early’’ retirement. Some studies had found that being within the age categories of 53–65 years [12, 16], at the time of renal transplantation, was negatively related to working post-transplant. In our study, just over one-third of our responders were in the age category of 55–64 years at the time of transplant (41.7 %) and at the time of completing the questionnaire (35.0 %). While none of our responders were 65 years of age at the time of receiving their transplant, this number increased to 15.0 % (n = 9) at the time of completing our questionnaire, which may partially explain the increase in the rate of retirement in our responders. Our sample was different from the Canadian renal transplant population with respect to donor type (living vs. deceased). During the most recent 10-year period (2002–2011) for which data was available from the Canadian Organ Recipient Register [2] the majority of recipients received deceased donor kidneys. However, this data also shows that Ontario transplant centers have performed the highest number of living donor kidney transplants in Canada over the past decade. Our data is consistent with this finding. Since the waiting period for a living donor renal transplantation is likely shorter, there is a lesser likelihood of disability associated with chronic renal disease, and consequent limitations on the activity participation of the potential living donor recipient. As found in some recent studies [3, 15, 16], it was expected that a higher rate of living donor kidneys might possibly have a positive impact on return to work post-transplant. However, our data did not support this trend. The differences between the working and not working responders, with respect to domestic/relationship status, level of education, and perceived physical and emotional health status, were important findings from the current study

J Occup Rehabil

that may have negatively affected the not working group’s ability to return to work. Living with others and having postsecondary education may facilitate an environment that supports the behavior of participation in paid work after transplant. Similarly, lower perceived physical and emotional health status may indicate the renal transplant recipients’ lack of readiness to participate in paid work. Other key finding from the current study included the significant decrease in the rate of employment post-transplant, compared to those working pre-transplant. While the demographic profile was similar to that reported in the American and European studies [10–17, 29], we found that the working rate (percentage who returned to work posttransplant) in our study was considerably lower than other studies and had further decreased significantly post-transplant. In contrast, most comparable American [10, 17] and European [29] studies demonstrated an increase in employment rates post-transplant. For example, Matas et al. [10] showed an increase from 42 % pre- to 47 % post-, while Raiz and Monroe [17] found an increase from 53 to 57 %, and a study by Ostrowski et al. [29] demonstrated an increase from 38 to 74 %. Our lower rate of return to work was therefore a surprising but an important finding. We would have expected a higher rate of return to work post-transplant, since our sample had the characteristics that are predictors of an increased likelihood of returning to work post-transplant (i.e. high level of education, and were working up until transplant). This discrepancy in rates of return to work post-transplant amongst our responders could be partially explained by the different definitions of employment utilized in our study and others. Our study also demonstrated increased reliance on government (provincial) disability insurance and less on employer-based insurance as source of income following transplant. Post-transplant medications are financially very costly for the employer, the individual recipient, and the government [7, 17, 30]. The high cost of transplant medications could deter employers from hiring renal transplant recipients. For example, in the non-transplant literature, majority of employers highlighted high costs associated with increased workers’ health insurance and compensation premiums as barriers in hiring people with disabilities [27]. In addition, the more restrictive income replacement policies in Canada may deter someone with chronic illness from seeking employment. For example in Ontario, household earnings beyond a minimum threshold could result in reduced disability insurance or ineligibility for provincial disability benefits. In contrast, in a Dutch study [11], 30 % of renal transplant recipients continued to receive government-based disability benefits while working, which augmented their household income. The more liberal policies provided additional incentives to seek or maintain employment. Although most of our not working

responders disagreed that fear of losing disability benefits was a factor in their decision to not work, the literature has shown that the renal transplant recipients’ potential fear of losing more comprehensive government-based healthcare benefits once employed can contribute to their decision regarding return to work [4, 18, 19]. The renal transplant recipients at our center, perceived both person-related factors such as physical and emotional readiness to work, need for income, value assigned to work and work experience pre-transplant, as well as work-related factors including job characteristics and availability, and employer attitude as contributing to participation in paid work. Subjective indicators of quality of life such as perceptions of mental and physical well-being have also been shown to contribute to employment of people with disabilities and chronic illnesses [19, 20, 22, 23]. The not working group in our sample rated their physical and emotional health lower than the working group. Also at the time of completion of the questionnaire, more of the working responders rated their emotional and physical health as Good to Excellent, compared to the not working responders. This finding is congruent with the literature on individuals with chronic illness, where illness perception and perceived health status were associated with increased sick leave [24]. Discrepancy between perceived physical fitness and actual participation in work has been reported in renal transplant recipients [18, 19]. The renal transplant recipients’ definition of disability may depend more on being a transplant recipient than on any physical limitations [19], Supporting renal transplant recipients to participate in paid work will necessitate bridging the gap between perceptions of disability and actual abilities to perform meaningful occupations. Perceived emotional and physical abilities and job readiness also influenced self-evaluation of personal skills [28, 31–34]. Individuals who believe that they can influence outcomes through their own abilities had an internal sense of control [20–23]. Self-identifying as being disabled [18, 19], could negatively impact the self-confidence of a renal transplant recipient. The post-transplant experience, associated with unpredictable episodes of rejection or infection could decrease the recipients’ internal locus of control, and negatively influence the work participation of the renal transplant recipients. In our study, those with the perception that their mental and physical well-being is Good or better, were more likely to participate in paid work than those who rated their well-being lower. Furthermore, the discrepancy between self-reported work limitations and those reported by health care providers [18, 19] may reflect the impact of locus of control to the behavior of working following transplantation. Hence, efforts to help individuals with chronic illness to participate in paid employment should focus on increasing sense of self-efficacy [20–23].

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J Occup Rehabil

Having an illness experience can often result in changes to a person’s value system and life priorities [28]. In the nontransplant literature, motivational factors such as values and meaning assigned to work have been found to be related to return to work in those with disabilities [31–34]. Individuals may decide to participate in roles other than paid work that provide them with more meaning, such as spending more time with family and friends. Indeed, for the not working responders in our study, lack of participation in paid work could be a reflection of changing priorities and increased meaning in spending more time with family whereas the employed responders identified that work provides them with structure, purpose and relief from boredom. Job availability and characteristics as well as employer characteristic have contributed to participation in paid employment [23, 24, 28, 31, 35, 36]. Having worked pretransplant had been determined to be a primary indicator for working post-transplant [9, 10, 13, 16, 17]. It is possible that working prior to transplant increases the likelihood of the availability of same or similar work following transplant. In our study, the majority of our working responders agreed that availability of their pre-transplant job was a facilitating factor to working post-transplant. Furthermore, favorable economic conditions facilitated return to work in our sample, which may have positively contributed to availability of jobs post-transplant. In the current study, participation in jobs that required higher physical demands decreased post-transplant. Conversely, participation in sedentary jobs increased. This is not a surprising finding, given the lower rating of perceived physical readiness in the not working group. Further insight into the types of jobs that individuals may find unfavorable following transplantation (e.g. due to physical demands, lack of flexibility for time off for medical appointments) may result in enhancing work participation or allow employers to accommodate for needs. In the literature on people with disabilities, employers indicated the need to increase knowledge of the impact of various disabilities on work ability [27]. In a study of employees with chronic illness [24], favorable work characteristics and appropriate work adjustments decreased the impact of low perceived health status on sick leave. Hence, it can be expected that educating employers on the potential limitations or needs of renal transplant recipients may contribute to appropriate job matching and accommodations in the workplace. Positively perceived employer characteristics such as social support in the workplace and employer’s understanding of the experience of working with a chronic illness (e.g. requiring time off for appointments) may increase the likelihood of working with a chronic illness or disability [23, 25, 26, 36]. Non-supportive employer attitude might potentially increase stress and thus negatively impact on health status [26]. Similarly, our study found that employees’

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perception of supervisor support could contribute to their return to work behavior. Surprisingly, while the majority of the working group identified that the work environment including employer attitude were enablers for employment after transplant, most of the not working responders disagreed that less supportive employers were barriers to working post-transplant. It is possible that the not working group perceived the person-related barriers as being more of a hindrance to working post-transplant than work-related factors. If this were to be the case, it could further explain the lower self-perceived emotional and physical health of the not working group, as the individuals may be attributing their participation in paid work more to their own agency, than the relevance of environmental variables. Overall, it appears that both the working and not working groups placed more emphasis on person-related factors including perceived readiness, personal skills and values as internal motivators that contributed to their decisions towards paid employment. These two groups of responders placed variable emphasis on work-related factors: the working group identified the enabling features of positive work environments, but the not-working group seemed to discount the relevance of unfavorable work environments. The participants in this study also offered suggestions to improve their working status post-transplant. There was strong support amongst participants for the development of a rehabilitation program with a focus on return to work. Our responders also valued that the transplant team engages the pre-transplant employers regarding returning to work. Within the context of the chronically ill population, it has been shown that countries that intentionally target resources and develop programs directed towards improving the employment environment (making it more disability friendly), increasing efforts on the appropriate matching of workers to jobs, and providing opportunities for retraining and vocational rehabilitation have higher return to work rates [37]. Vocational rehabilitation programs that include empowerment of those with chronic illness to request work accommodations and address self-confidence and self-efficacy have shown to be effective [38]. Furthermore, in facilitating return to work, renal transplant recipients should be supported to reflect on priorities, values, and roles pre- and post-transplant. Strengthening the internal motivators could increase the likelihood towards successful outcomes, when compared to emphasis on external motivators. In addition, considering involvement and education of employers may warrant further attention.

Limitations and Recommendations for Future Research Due to our small sample size, it is plausible that the power of the study was compromised thus impacting on the ability to

J Occup Rehabil

find statistical significance for some of the factors evaluated. Using the cross-sectional study methodology poses an inherent limitation in a study. Causal relationships, or the relative contributions of the factors tested for, are difficult to establish unless responders provide fulsome and insightful comments. In addition, we can only postulate, not make conclusions, about the relationships between the variables or the relative significance of factors on return to work in kidney transplant recipients. The development of the content of the questionnaire was based on the theoretical MOHO [28] and the literature, further validated by clinicians. This potentially posed a bias in interpretation of the results. Future research should consider further exploring what matters to the renal transplant recipients. This might be accomplished using a qualitative medium of inquiry such as focus groups with the working and not working recipients, one-on-one interviews, or canvassing opinion leaders for a more thorough understanding of the issues. We hope that our study can lead to active invitation and involvement of the renal transplant recipients in program planning towards enablement and participation in valued life roles such as paid work. Acknowledgments The authors would like to thank professors Rebecca Renwick and Lisa Cicutto in offering their support in the development of study protocol and questionnaire. We would also like to acknowledge Gillian Barrie, a final year graduate student in Occupational Therapy for her efforts in development of the questionnaire. The authors are also grateful to the University Health Network’s Allied Health Research Funding award for financial support of this research project. Conflict of interest of interest.

The authors declare that they have no conflict

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