Epilepsy & Behavior 37 (2014) 227–232
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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Choice and control: How involved are people with epilepsy and their families in the management of their epilepsy? Results from an Australian survey in the disability sector Michelle Bellon a,⁎, Wayne Pfeiffer b, Vanessa Maurici a a b
Disability & Community Inclusion, School of Health Sciences, Flinders University, GPO Box 2100, Adelaide, South Australia 5001, Australia Epilepsy Foundation, Victoria, Australia
a r t i c l e
i n f o
Article history: Received 29 April 2014 Revised 1 July 2014 Accepted 3 July 2014 Available online xxxx Keywords: Epilepsy management plan Person-centered planning Disability Self-empowerment Locus of control
a b s t r a c t This study explored the extent to which people with epilepsy and their families have choice and control over the management of their epilepsy and the support provided in the Australian disability sector. It measured the level of direct involvement in planning and recording of their epilepsy health-care needs and support required through the use of epilepsy management plans. An Australian online survey was completed by 118 adults with epilepsy and 171 family members of children and adults with epilepsy, providing demographic and diagnostic data and details of their epilepsy management plan, whether they were involved in writing the plan and the extent to which it included their views on how they want to be supported. Results indicate that just over half of all respondents had an epilepsy management plan, with 83% revised within the past 12 months. Although the majority of respondents were directly involved in writing their plan (87%), only two-thirds (66%) felt that their plan included their views on how they wanted to be supported. Open-ended comments from 111 respondents indicated their desire to be actively involved in this process, as either collaborative team members or ‘in charge’ of the process. In spite of a move towards person-centered approaches and greater choice and control, further emphasis must be placed on actively involving the person with epilepsy and their family in writing and incorporating their views on support within their epilepsy management plans. This research was undertaken by the Epilepsy Foundation to inform the development of epilepsy support resources for the newly introduced Australian National Disability Insurance Scheme. © 2014 Published by Elsevier Inc.
1. Introduction Across the world, best practice models in health management and disability support are placing increasing emphasis on the individual's active involvement in the development of their own health management and support plan. A paradigm shift towards individualized supports and person-centered approaches has come to the fore, often explicitly mandated by government policy [1,2]. Evidence indicates that people with chronic disorders (including epilepsy, heart disease, diabetes, arthritis, and asthma) can effectively collaborate in managing their health [3,4], with good health outcomes associated with the patient's active participation in managing their condition [5]. Many people with epilepsy also experience additional comorbid disabilities [6,7]. These compounding factors often result in complex challenges to ensuring appropriate epilepsy education, management, and lifestyle changes. As people with a disability are more likely to experience poorer health and more complex needs than the general population, it is important that planning is in place to ensure that health needs ⁎ Corresponding author. Tel.: +61 8 8201 3645. E-mail address: Michelle.Bellon@flinders.edu.au (M. Bellon).
http://dx.doi.org/10.1016/j.yebeh.2014.07.011 1525-5050/© 2014 Published by Elsevier Inc.
are met. In particular, people with intellectual disability are often left behind in the developments that are made to the health of other members of the community [8]. Many barriers to accessing health care exist, including few opportunities for empowerment to improve and protect their own health and limited numbers of appropriately trained health professionals, leading to significant health inequity [9–11]. Good communication between members of support teams, service providers, and health-care professionals is required on behalf of the person with a disability and their family to combat these issues [12]. In order to achieve active involvement in decision-making, disability research has long focused on the shift towards person-centered approaches. Person-centered planning (PCP) adopts an individualized approach, reflecting the unique circumstances of the person with a disability when assessing and organizing what is to be done [13]. This approach incorporates the views and aspirations of the persons themselves, their family, and wider network, ensuring that decisions about them are not made without them [14]. Epilepsy management plans, also termed ‘care plans’ or ‘support plans’, involve collating information on the individual's health-care needs and documenting how family and support staff should respond and support the individual to achieve their personal goals such as social
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inclusion and management of their epilepsy within a single document. The process is based on evidence and risk assessment and lists epilepsy support and interventions to be undertaken in the event of seizures, how the person's epilepsy outcomes are to be achieved, and the review of the support that will occur at regular times. These plans aim at helping people involved with the person living with epilepsy to recognize when seizures are occurring and at giving clear directions about the appropriate support and first aid to be provided to the person. The UK National Institute for Health and Clinical Excellence (NICE) has produced guidelines for the diagnosis and management of epilepsy in adults and children [15]. The National Institute for Health and Clinical Excellence (2012) guidelines for epilepsy advise ‘All individuals with epilepsy should have a comprehensive care plan that is agreed between the individuals, their family and/or carers as appropriate, and primary and secondary care providers.’ [16]. It is emphasized that treatment and care should reflect the individual's needs and preferences, with people with epilepsy given the opportunity to make informed decisions about their care and treatment in collaboration with their health-care professionals. Good communication between health-care professionals and people with epilepsy (and their family and carers) is essential and should be supported by individually tailored, evidence-based written information. In addition, the treatment, care, and information given need to be culturally appropriate and accessible to people with physical, sensory, or learning disabilities and to people who do not speak or read English. Unfortunately, reports on a fragmented health-care system in the UK indicate that the implementation of the NICE epilepsy management guidelines is problematic. Inconsistent and uncoordinated services continue, demonstrating the urgent need for improved continuity of care [5,17]. Although the NICE guidelines include ‘outline care algorithms’ for adults and children, different service providers adopt different approaches to care planning [18]. Within Australia, it is recognized that there is an urgent need for the NICE guidelines to be more widely adopted [19] in order to ensure that all epilepsy management plans are developed within a person-centered framework and incorporate the individual's needs, preferences, and informed decision-making on their care and treatment. The aim of the current study was to explore the extent to which people with epilepsy and their family members within Australia are actively involved in the development of their epilepsy management plan and the support they receive from staff within the disability sector. Recommendations on ways to achieve greater choice and control in order to enhance person-centered epilepsy management in the disability sector are also discussed. 2. Methods An online survey was developed using SurveyMonkey to explore the experiences and needs of adults with epilepsy and their family around the development of epilepsy management plans. The survey included 24 questions requesting sociodemographic and diagnostic information, an adapted epilepsy knowledge scale, and details of their epilepsy management plan. This article reports on responses related to whether participants (or their family member) have an epilepsy management plan, when it was last updated, whether they were involved in writing the plan, the extent to which it includes their views on how they want to be supported, and how they would like to be involved in developing their plan (see online supplement). Responses to other questions including confidence in managing their epilepsy, as well as factors influencing their confidence levels, will be reported elsewhere. Thirty disability and epilepsy organizations across each state and territory in Australia were contacted directly by the research team and asked to place an advertisement for the survey on their websites and newsletters to members. In addition, advertisements including the survey link were published in local and national newspapers and magazines (including ‘The Big Issue’). Criteria for participation specified
that respondents were over 18 years of age, either with epilepsy themselves or were family members to a child or adult with epilepsy. All survey responses were imported and analyzed using SPSS 20. Responses to open-ended questions were imported into NVivo10 where each response was read, discussed, and coded collaboratively by two researchers.
3. Results The survey was completed by 291 respondents, consisting of 118 adults with epilepsy and 171 family members (see Table 1). Family members reported on 99 children under 18 years of age, with parents as the most frequent respondents (n = 144, 84%). The mean age of family members was 43 years, ranging from 20 to 76 years. Sixty-two percent of the respondents were from Victoria, with other participants from New South Wales (15%), Queensland (9%), Western Australia (7%), South Australia (4%), Tasmania (2%), Australian Capital Territory (0.3%), and Northern Territory (0.3%). The age range of the 291 people with epilepsy represented in this sample was from infant to 79 years (mean: 26.7, 17 missing), with 167 (58%) females with epilepsy. Table 2 illustrates that just over half of all respondents (n = 142, 51%) indicated that the person with epilepsy (either themselves or their family member) had a substantially reduced capacity in communication, social interaction, learning, mobility, self-care, or self-management (12 missing). This population could be described as having a severe or profound core activity limitation, defined as sometimes or always requiring personal help or supervision with core activities of self-care, mobility, and communication [20]. This question was included to provide an indication of whether the respondent might be eligible for the newly introduced Australian National Disability Insurance Scheme and inform the development of resources targeted for this population. It also provides a point of comparison between respondents with and those without high levels of self-reported disability. Respondents were asked to identify the person with epilepsy's main disability type from a presented list. ‘Neurological disability’ was the most common across all groups. Those who indicated a ‘severe core activity limitation’ reported higher rates of intellectual disability, physical disability, and autism spectrum as their primary disability compared with those who did not. There is a small but statistically significant difference between the mean ages of the persons with epilepsy within the two groups. Those with a severe core activity limitation were, on average, 24 years of age, whereas those without a severe core activity limitation were, on average, 30 years of age. Over half of the respondents from each group indicated that epilepsy had been diagnosed for longer than 11 years, indicating long-term experiences in managing and living with the effects of epilepsy in both cohorts. Just over half of all respondents indicated that they (or their family member with epilepsy) had an epilepsy management plan (57%). This figure was slightly higher for those with a severe core activity limitation (65%) and dropped to only 50% for those without when separated into the two groups. Children were more likely to have an epilepsy management plan than adults, particularly when there was no severe core activity limitation. Reassuringly, of those who indicated that they had Table 1 Survey participants by respondent category. Number of respondents
Person with epilepsy Family membera Not indicated Total a b
b18 yearsa
N18 years
Totalb
– 99 – 99 (36%)
107 67 1 175 (64%)
118 (41%) 171 (59%) 2 291
Family member reporting on child under 18 years of age. 17 respondents did not indicate age.
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Table 2 Demographic and diagnostic details of persons with epilepsy according to level of disability. Mean age of persons with epilepsy (SD)
Severe core activity limitation (n = 142)
No severe core activity limitation (n = 137) 30 (17.8)b
24 (18.1)
Primary disability Neurological Intellectual Physical Autism spectrum Mental health Sensory Missing Time since epilepsy diagnosis b1 year 1–5 years 6–10 years 11–20 years N20 years Missing Has an epilepsy management plan Yes No Unsure Missing Last updated b1 year ago 1–2 years ago N2 years ago Not sure Missing a b c d e f
b18 years (n = 39)
N18 years (n = 90)
Totald
86 (61%) 26 (18%) 14 (10%) 9 (6%) 2 (1%) 2 (1%) 3 (2%)
30 3 2 1 – –
70 5f 5 – 2 2
108 (79%)e 10 (7.3%) 7 (5%) 1 (1%) 3 (2%) 3 (2%) 5 (4%)
1 11 8 20 40
10 (8%) 38 (27%) 23 (16%) 31 (22%) 42 (30%) 2
11 21 6 1 –
4 11 12 27 36
16 (12%) 34 (25%) 18 (13%) 30 (22%) 39 (29%) –
28 (9%) 74 (25%) 41 (14%) 63 (22%) 83 (29%)
43 6 3
46 16 6
92 (65%) 23 (16%) 9 (6%) 18 (13%)
36 1 1
28e 42 13
69 (50%)e 45 (33%)e 14 (10%) 9 (7%)
165 (57%) 69 (24%) 25 (9%) 32 (11%)
41 4 – 1
34 6 3 2
75 (82%) 10 (11%) 3 (3%) 3 (3%) 1 (1%)
31 4 1 1
25 3 1 13
58 (84%) 8 (12%) 3 (4%) – –
136 (83%) 19 (12%) 6 (4%) 3 (2%) 1 (1%)
b18 years (n = 57)
N18 years (n = 76)
Total
37 10 5 2 1 –
39 14 8 7 1 2
8 26 14 9 –
Table 3 Level of direct involvement of persons with epilepsy or family members in developing their epilepsy management plan.
Were you directly involved in writing your plan? (Yes) Person with epilepsy Family membera of child b18 years of adult N18 years Total Does your plan include your views on how you want to be supported? (Yes) Person with epilepsy Family member of child b18 years of adult N18 years Total b c
c
198 (68%) 38 (13%) 21 (7%) 10 (3%) 5 (2%) 5 (2%) 14 (5%)
12 respondents did not indicate level of disability. Statistically significant difference at p b 0.01 using the independent samples t-test. 9 respondents did not indicate age. 8 respondents did not indicate age. Statistically significant difference at p b 0.01 using the chi-squared test for independence (with Yates' continuity correction). 5 self-respondents indicated that they had an intellectual disability, 4 without severe core activity limitation and 1 not indicated.
an epilepsy management plan, the majority were updated within the past 12 months (83%), with only 12% between 1 and 2 years and 4% longer than 2 years. Responses by participants who indicated that they (or their family member) had an epilepsy management plan were further analyzed
a
Total (n = 291)a
17 did not indicate age. 3 did not indicate disability severity. 2 did not indicate disability severity.
Severe core activity limitation (n = 92)
No severe core activity limitation (n = 69)
Total (n = 165)
11 (12%) 70 (76%) 38 32 81 (88%)
20 (29%) 40 (58%) 6 33 60 (87%)
31 (19%) 113 (69%)b
9 (10%) 54 (59%) 27 26 63 (69%)
16 (23%) 28 (41%) 22 6 44 (64%)
144 (87%)
25 (15%) 84 (51%)c
109 (66%)
to determine their level of direct involvement (Table 3). Each group indicated similar high levels of engagement, with a total of 87% indicating that they were directly involved in writing their (own or family member's) plan. There was a difference between the levels of family involvement according to disability severity, with 76% of the family members directly involved when there was a severe core activity limitation in contrast to only 58% when there was not. Although not statistically significant, this is not surprising and could reflect the active involvement of family in health management decisions when there are higher levels of disability. Fewer respondents indicated that their epilepsy management plan included their views on how support will be provided (66%). Similar trends are seen to the previous question, with an almost 20% higher inclusion of family views when there is a severe limitation. A total of 111 open-ended responses were received, providing details on how people with epilepsy and family members would like to be involved in developing their epilepsy management plan. Responses were grouped into a range of themes (Table 4), indicating a desire for a specific role; general comments indicating active interest in involvement; and others which were unsure, not applicable, or not directly related to the question. 3.1. Role Almost half of all respondents (48%) directly indicated the role they would like to play in developing their (or their family member's) epilepsy management plan. Three clear roles emerged, including ‘team member’, ‘in charge’, and ‘leave it to the professionals’ which are explored below.
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Table 4 Open-ended responses to ‘How would you like to be involved in developing your epilepsy management plan?’. Themes
Preferred role Team member In charge Leave it to the professionals General active interest in involvement Unsure N/A Other a
One comment further illustrates the importance of actively including the person with epilepsy in the presence of significant disability: ‘Fully involved despite his limited communication.’ (#26; sister of a 31-year-old with epilepsy)
Number of respondents Persons with epilepsy n = 41
Family n = 68
8 (20%) 5 (12%) 1 (2%) 7 (17%) 7 (2%) 0 12 (29%)
32 (47%) 7 (10%) 0 9 (13%) 7 (10%) 4 (6%) 10 (15%)
Total n = 111
Parents of adults with epilepsy also shared their desire to be actively involved in writing the plan: 40 (36%) 13a (12%) 1 (1%) 17a (15%) 14 (13%) 4 (3%) 22 (20%)
One respondent did not indicate their identity.
3.1.1. Team member Most respondents (35%) indicated that they would like to have a collaborative role in the development of their own or family member's epilepsy management plan: ‘Be involved in how my plan is made is important to me as if I'm not involved it won't work well.’ (#257; female with epilepsy, 39 years old) ‘Write the plan and confirm with doctor it is appropriate.’ (#65; mother of a 33-year-old person with epilepsy) ‘In consultation with my neurologist!’ (#132; female with epilepsy, 28 years old) ‘Parents and support staff who know [name] well to help develop this plan.’ (#115; mother of a 27-year-old person with epilepsy)
‘My son has a profound intellectual disability and I am aware of his needs as his Mum.’ (#142; mother of a 20-year-old person with epilepsy) 3.3. Unsure Fourteen (13%) respondents indicated that they were ‘not sure’ how they would like to be involved, with six expressing that they were not sure what an epilepsy management plan was: ‘Not sure where or how to do a plan.’ (#29; mother of a 21-year-old person with epilepsy) ‘I have had epilepsy all these years and never heard of a management plan and don't know what it is.’ (#276; female epilepsy, 58 years old) Another 2 respondents indicated that they had never been asked about an epilepsy management plan: ‘This has never been discussed with me.’ (#118; mother of a 7-year-old person with epilepsy) ‘A plan has never being offered by neurologists or GPs. Just increase or change medication, have X-rays to see how damaged the brain is!!!!’ (#286; husband of a 72-year-old person with epilepsy)
A range of comments specifically related to the need to be listened to and have their own views incorporated into the plan:
3.4. Not applicable ‘Just asked my views.’ (#48; mother of a 31-year-old person with epilepsy) ‘Dr.'s need to listen to the family's input before drafting written material.’ (#88; mother of a 9-year-old person with epilepsy) ‘She would like to be involved by having her opinion/position heard about her experiences and how they make her feel.’ (#272; primary care giver of a 65-year-old female with epilepsy) 3.1.2. In charge Another 12% of the respondents articulated the desire to have more active control and be in charge or direct the development of their plan: ‘Main decision maker.’ (#47; identity and age unspecified) ‘I would like to be in charge.’ (#5; female with epilepsy, 32 years old) 3.1.3. Leave it up to the professionals Only one respondent wrote that they did not want any active involvement: ‘I would rather leave it up to the professionals.’ (#235; male with epilepsy, 26 years old) 3.2. Active interest A number of respondents (15%) answered this question by sharing their interest to be actively involved in the process, although they did not specifically state how: ‘Front and Center!’ (#220; mother of a 9-year-old person with epilepsy) ‘Across all aspects.’ (#149; female with epilepsy, 48 years old) ‘100% involved.’ (#202; mother of a 9-year-old person with epilepsy)
Only four family respondents stated that this question was not applicable, with two further indicating that the person with epilepsy was as follows: ‘Unable to communicate.’ (#126; mother of a 14-year-old person with epilepsy) or ‘Not capable of being involved due to intellectual delay.’ (#263; mother of a 12-year-old person with epilepsy) 3.5. Other Other comments did not directly relate to how people would like to be involved but reflected respondents' needs for further information: ‘Actually know what epilepsy is.’ (#274; female with epilepsy, 27 years old) ‘Be able to have more information.’ (#74; mother of a 6-year-old person with epilepsy) ‘All family members should be aware of the plan, as I have been present for many of my sister's seizures, but was never sure of what to do.’ (#192; sister of a 47-year-old person with epilepsy) as well as areas for additional support: ‘Information, and assistance with available sources and assistance both financially and academically.’ (#35; mother of a 16-year-old person with epilepsy) ‘Family support for respite.’ (#287; grandparent of a 1-year-old person with epilepsy) ‘Housing in the future.’ (#131; male with epilepsy, age not indicated)
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4. Discussion This unique study is the first to examine the extent of personcentered epilepsy practice in the Australian disability sector. Just over half (57%) of all respondents indicated that they (or their family member with epilepsy) had an epilepsy management plan. This was more commonly the case when the person with epilepsy had a severe core activity limitation (65%) in comparison with a lower level of disability (50%). Age also played an important role, with children more likely than adults to have an epilepsy management plan, particularly when there was a lower level of disability. The majority (83%) were reported to be up-to-date, reviewed within the past 12 months. The expressed need for more information about epilepsy and how to respond to seizures is of interest. These comments suggest a lack of understanding of epilepsy by both individuals and families. This information is required in plain English and accessible formats both for families and the person with severe disability or complex communication needs. Some respondents were not aware of the use or purpose of epilepsy management plans which suggests that a broader information and communication strategy may be required to raise awareness of the role such tools can play in providing greater choice and control to the person with epilepsy and empowering self-management. Sixty-three percent of the respondents also indicated in varying ways their desire to be actively involved in developing their own or family member's epilepsy management plan. Comments ranged from preferring a collaborative role to ‘being in charge’, as well as more general comments indicating a strong desire to be involved in the process. Family respondents strongly voiced their desire to be active team members when making decisions (47%). Person-centered planning in epilepsy management involves the active participation of the individual with epilepsy and their family. According to Elger and Schmidt [21], “People with epilepsy need empathy and sympathetic, holistic care that integrates science with the personal needs of the individual” (p. 538). A literature review of services that have introduced person-centered practices indicates that increased choice and control have resulted in positive outcomes in the health, well-being, and social participation of people with disability, their families, and carers in addition to being cost-effective [22]. All Australian states and territories have legislative requirements to practice person-centered approaches. The current Australian National Standards for Disability Services stipulate that disability service providers meet the individual needs of the person with a disability, with personalized plans developed with each service user (Standard 3: individual outcomes) [23]. These National Standards were revised in December 2013, with increasing emphasis placed on active engagement with people with disability and, where agreed, their supporters to plan and review service and support delivery. Implementing person-centered planning (PCP) requires professionals to address the issue of client empowerment, which, for many, is an uncomfortable and radical change [24,25]. For PCP to succeed, it must be practiced at all levels within an organization or service, with staff attitudes and values aligned to empowering clients to be involved in making decisions which affect their own lives. Although definitions vary, the underlying principle of epilepsy self-management is that the daily management of the condition is handled by the patient rather than by a health-care provider, with a positive relationship between health care/individual/family integral to promoting comprehensive care and improved outcomes [26]. It is acknowledged that epilepsy management should include the views of both the physician and the person with epilepsy [27]; however, people with epilepsy have reported that they would like greater involvement in discussions regarding their treatment and to be more actively involved in planning their seizure management [28]. In this sample, patients tended to be less proactive, waiting instead until their doctor initiated or raised issues. Improving self-management of epilepsy and increasing proactive patient–doctor interactions are
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important areas for development and reinforce findings from the current study. In contrast, diabetes has been well established as a self-managed illness, which involves the patient making the decisions that most affect their health and well-being. In Anderson and Funnell's review [29], collaboration between the person with diabetes and their health-care professional needs to be emphasized, and the focus on ‘compliance’ needs to be minimized as this tends to result in conflict and tension within health management. In order to achieve a collaborative approach to developing diabetes self-management plans, the authors promote a shift towards an ‘empowerment paradigm’, whereby professionals “change from feeling responsible for patients to feeling responsible to patients” (p. 155). Other studies by the same authors also demonstrate positive results from diabetes interventions centered in patient empowerment [30,31]. People living with epilepsy usually have seizures at unpredictable times and frequency, which varies from individual to individual. It is, therefore, crucial that everyone who supports the person understands the uniqueness of the individual's epilepsy and how the person wants to be supported with their epilepsy and seizures. A good epilepsy management plan documents the person's seizure types, support needs, and emergency procedures with the person with epilepsy being an integral part of the development process. The key elements include the following: • the person understands their epilepsy • the person and their circle of support have been actively involved in decision-making • staff are educated and trained in epilepsy management • staff are confident in supporting the person • there are clearly established communication pathways between all the relevant services and the person's key supporters • service providers have policies and procedures that meet the needs of the person and provide a safe and healthy environment, which enables the person to participate to their full potential and identifies opportunities to refer people to relevant services. A number of limitations are acknowledged within this study. Primarily, survey respondents were self-selected and provided selfreported data which introduced inherent bias. The population was broadly diverse, including people with and those without severe disabilities, with limited clinical data available. In addition, low response numbers and unbalanced state representation limit the generalizability of these findings and present a heavy bias towards Victorian experiences. However, these data present themes which are very consistent across respondents and a source of rich personal experience enabling discussion and exploration on the implications for practice. 5. Conclusion This study has explored the extent to which people with epilepsy (and their family) are actively involved in making informed decisions about how their epilepsy is managed and supported which impacts their own lives. Person-centered planning in self-management incorporates the views and goals of the individual, ensuring that decisions are made collaboratively. Responses from this study indicate that people with epilepsy want to be more involved in discussions about how their epilepsy is managed and supported and be more actively involved in planning their seizure management. For this to succeed, ongoing staff training on the principles and techniques of PCP is needed, as well as increased epilepsy education and adoption of management guidelines and plans which support the proactive involvement of people with a disability and their family that enables people with a disability to exercise choice and control in living their lives to the fullest.
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Acknowledgments This research was undertaken by the Epilepsy Foundation and funded through a Practical Design Fund from the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), with ethics approval granted by the Flinders Social and Behavioural Research Ethics Committee (Project No. 5965). Sincere thanks are due to Peter Cookson for proofreading support. This research was used to inform the development of epilepsy resources for use under the Australian National Disability Insurance Scheme which included the following suite of resources that can be accessed via www.epinet.org.au including: 1. 2. 3. 4. 5. 6.
Learning About Epilepsy: an easy English resource Developing an EMP: a resource for support workers and families My Epilepsy Review: an easy English resource Epilepsy Management Plan Electronic Template Emergency Medication Management Plan Electronic Templates Epilepsy Management in the Disability Sector: a resource for better practice.
Conflict of interest The authors report no conflicts of interest. Appendix A. Supplementary data Supplementary data to this article can be found online at http://dx. doi.org/10.1016/j.yebeh.2014.07.011. References [1] Lord J, Hutchison P. Individualised support and funding: building blocks for capacity building and inclusion. Disabil Soc 2013;18(1):71–86. [2] Council of Australian Governments (COAG). National disability strategy 2010–2020 [cited 2013 March 12] ; 2011 [Commonwealth of Australia. Available from: http:// www.fahcsia.gov.au/sites/default/files/documents/05_2012/national_disability_ strategy_2010_2020.pdf]. [3] Centre for the Advancement of Health. Patients as effective collaborators in managing chronic conditions [cited 2013 February 10] ; 1999 [Washington DC. Available from: http://www.milbank.org/uploads/documents/990811chronic.html]. [4] Kobau R, DiIorio C. Epilepsy self-management: a comparison of self-efficacy and outcome expectancy for medication adherence and lifestyle behaviors among people with epilepsy. Epilepsy Behav 2003;4:217–25. [5] Varley J, Delanty N, Normand C, Coyne I. Epilepsy in Ireland: towards the primary– tertiary care continuum. Seizure 2010;19:47–52. [6] Kessler RC, Lane MC, Shahly V, Stang PE. Accounting for comorbidity in assessing the burden of epilepsy among US adults: results from the National Comorbidity Survey Replication (NCS-R). Mol Psychiatry 2012;17:748–58. [7] Russ SA, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorder. Pediatrics 2012;129:246–64. [8] World Health Organization. In: WHO Collaboration with the World Bank, editor. World report on disability. Geneva: WHO; 2011.
[9] Lennox NG, Diggens JN, Ugoni AM. The general practice care of people with intellectual disability: barriers and solutions. J Intellect Disabil Res 1997;41:380–90. [10] Ouellette-Kuntz H. Understanding health disparities and inequities faced by individuals with intellectual disabilities. J Appl Res Intellect Disabil 2005;18: 113–21. [11] Lennox N, Ware R, Carrington S, O'Callaghan M, Williams G, McPherson L, et al. Ask: a health advocacy program for adolescents with an intellectual disability: a cluster randomised controlled trial. BMC Public Health 2012;12:750. [12] Cooper SA, Morrison J, Melville C, Finlayson J, Allan L, Martin G, et al. Improving the health of people with intellectual disabilities: outcomes of a health screening programme after 1 year. J Intellect Disabil Res 2006;50:667–77. [13] Mansell J, Beadle-Brown J. Person-centred planning or person-centred action? Policy and practice in intellectual disability services. J Appl Res Intellect Disabil 2004;17: 1–9. [14] Black L, Mcconkey R, Roberts P, Ferguson P. Developing a person-centred support service for families caring for children with severe learning disabilities in rural and urban areas. J Intellect Disabil 2010;14:111–31. [15] Stokes T, Shaw EJ, Juarez-Garcia A, Camosso-Stefinovic J, Baker R. Clinical guidelines and evidence review for the epilepsies: diagnosis and management in adults and children in primary and secondary care. London: Royal College of General Practitioners; 2004. [16] National Institute for Health and Clinical Excellence (NICE). The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care. London. [issued 2012 Jan; cited 2013 Feb 9]. Available from: http://publications.nice.org.uk/the-epilepsies-the-diagnosis-and-management-ofthe-epilepsies-in-adults-and-children-in-primary-and-cg137. [17] Marchibroda JM. The impact of health information technology on collaborative chronic care management. J Manag Care Pharm 2008;14:3–11. [18] Kernohan G, Cousins W, McConkey R, Barr O, Wells K. Developing an epilepsy care plan: informing quality care. Research report for epilepsy action. Institute of Nursing Research, University of Ulster; 2010. p. 1–44. [19] Keating J, Hayward B, Buchholtz M, Donley M. ‘Behaviour’ or seizure: epilepsy in intellectual disability. Poster presented at the National Disability Services Conference; 2011 March 22–23; Melbourne, Australia; 2011. [20] Australian Bureau of Statistics. National Health Survey: summary of results, 2007–08. ABS cat.no. 4364.0. Canberra: ABS; 2009. [21] Elger CE, Schmidt D. Modern management of epilepsy: a practical approach. Epilepsy Behav 2008;12:501–39. [22] Ottmann G, Allen J, Feldman P. Self-directed community aged care for people with complex needs: a literature review. Melbourne: Uniting Care Community Options/ Deakin University QRN; 2009. [23] Australian Government. National Standards for Disability Services. [updated 2014 March 4, cited 2014 April 25]. Available from: http://www.dss.gov.au/sites/default/ files/documents/12_2013/nsds_web.pdf. [24] Parley F. Person-centred outcomes: are outcomes improved where a person-centred care model is used? J Learn Disabil 2001;5:299–308. [25] Jenkins R. Issues of empowerment for nurses and clients. Nurs Stand 1997;11(46): 44–6. [26] Smith G, Wagner JL. Commentary on ‘Care delivery and self-management strategies for children with epilepsy’. Evid Based Child Health Cochrane Rev J 2012;7: 241–3. [27] Rothwell PM, McDowell Z, Wong CK, Dorman PJ. Doctors and patients don't agree: cross sectional study of patient's and doctors' perceptions and assessments of disability in multiple sclerosis. Br Med J 1997;314:1580–3. [28] Ross J, Stefan H, Schauble B, Day R, Sander J. European survey of the level of satisfaction of patients and physicians in the management of epilepsy in general practice. Epilepsy Behav 2010;19:36–42. [29] Anderson R, Funnell M. Patient empowerment: reflections on the challenge of fostering the adoption of a new paradigm. Patient Educ Couns 2005;57:153–7. [30] Anderson R, Funnell M, Butler P, Arnold M, Fitzgerald J, Feste C. Patient empowerment: results of a randomized controlled trial. Diabetes Care 1995;18:943–9. [31] Anderson R, Funnell M, Fitzgerald J, Marrero D. The Diabetes Empowerment Scale: a measure of psychosocial efficacy. Diabetes Care 2000;23:739–43.
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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh
Choice and control: How involved are people with epilepsy and their families in the management of their epilepsy? Results from an Australian survey in the disability sector Michelle Bellon a,⁎, Wayne Pfeiffer b, Vanessa Maurici a a b
Disability & Community Inclusion, School of Health Sciences, Flinders University, GPO Box 2100, Adelaide, South Australia 5001, Australia Epilepsy Foundation, Victoria, Australia
a r t i c l e
i n f o
Article history: Received 29 April 2014 Revised 1 July 2014 Accepted 3 July 2014 Available online xxxx Keywords: Epilepsy management plan Person-centered planning Disability Self-empowerment Locus of control
a b s t r a c t This study explored the extent to which people with epilepsy and their families have choice and control over the management of their epilepsy and the support provided in the Australian disability sector. It measured the level of direct involvement in planning and recording of their epilepsy health-care needs and support required through the use of epilepsy management plans. An Australian online survey was completed by 118 adults with epilepsy and 171 family members of children and adults with epilepsy, providing demographic and diagnostic data and details of their epilepsy management plan, whether they were involved in writing the plan and the extent to which it included their views on how they want to be supported. Results indicate that just over half of all respondents had an epilepsy management plan, with 83% revised within the past 12 months. Although the majority of respondents were directly involved in writing their plan (87%), only two-thirds (66%) felt that their plan included their views on how they wanted to be supported. Open-ended comments from 111 respondents indicated their desire to be actively involved in this process, as either collaborative team members or ‘in charge’ of the process. In spite of a move towards person-centered approaches and greater choice and control, further emphasis must be placed on actively involving the person with epilepsy and their family in writing and incorporating their views on support within their epilepsy management plans. This research was undertaken by the Epilepsy Foundation to inform the development of epilepsy support resources for the newly introduced Australian National Disability Insurance Scheme. © 2014 Published by Elsevier Inc.
1. Introduction Across the world, best practice models in health management and disability support are placing increasing emphasis on the individual's active involvement in the development of their own health management and support plan. A paradigm shift towards individualized supports and person-centered approaches has come to the fore, often explicitly mandated by government policy [1,2]. Evidence indicates that people with chronic disorders (including epilepsy, heart disease, diabetes, arthritis, and asthma) can effectively collaborate in managing their health [3,4], with good health outcomes associated with the patient's active participation in managing their condition [5]. Many people with epilepsy also experience additional comorbid disabilities [6,7]. These compounding factors often result in complex challenges to ensuring appropriate epilepsy education, management, and lifestyle changes. As people with a disability are more likely to experience poorer health and more complex needs than the general population, it is important that planning is in place to ensure that health needs ⁎ Corresponding author. Tel.: +61 8 8201 3645. E-mail address: Michelle.Bellon@flinders.edu.au (M. Bellon).
http://dx.doi.org/10.1016/j.yebeh.2014.07.011 1525-5050/© 2014 Published by Elsevier Inc.
are met. In particular, people with intellectual disability are often left behind in the developments that are made to the health of other members of the community [8]. Many barriers to accessing health care exist, including few opportunities for empowerment to improve and protect their own health and limited numbers of appropriately trained health professionals, leading to significant health inequity [9–11]. Good communication between members of support teams, service providers, and health-care professionals is required on behalf of the person with a disability and their family to combat these issues [12]. In order to achieve active involvement in decision-making, disability research has long focused on the shift towards person-centered approaches. Person-centered planning (PCP) adopts an individualized approach, reflecting the unique circumstances of the person with a disability when assessing and organizing what is to be done [13]. This approach incorporates the views and aspirations of the persons themselves, their family, and wider network, ensuring that decisions about them are not made without them [14]. Epilepsy management plans, also termed ‘care plans’ or ‘support plans’, involve collating information on the individual's health-care needs and documenting how family and support staff should respond and support the individual to achieve their personal goals such as social
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inclusion and management of their epilepsy within a single document. The process is based on evidence and risk assessment and lists epilepsy support and interventions to be undertaken in the event of seizures, how the person's epilepsy outcomes are to be achieved, and the review of the support that will occur at regular times. These plans aim at helping people involved with the person living with epilepsy to recognize when seizures are occurring and at giving clear directions about the appropriate support and first aid to be provided to the person. The UK National Institute for Health and Clinical Excellence (NICE) has produced guidelines for the diagnosis and management of epilepsy in adults and children [15]. The National Institute for Health and Clinical Excellence (2012) guidelines for epilepsy advise ‘All individuals with epilepsy should have a comprehensive care plan that is agreed between the individuals, their family and/or carers as appropriate, and primary and secondary care providers.’ [16]. It is emphasized that treatment and care should reflect the individual's needs and preferences, with people with epilepsy given the opportunity to make informed decisions about their care and treatment in collaboration with their health-care professionals. Good communication between health-care professionals and people with epilepsy (and their family and carers) is essential and should be supported by individually tailored, evidence-based written information. In addition, the treatment, care, and information given need to be culturally appropriate and accessible to people with physical, sensory, or learning disabilities and to people who do not speak or read English. Unfortunately, reports on a fragmented health-care system in the UK indicate that the implementation of the NICE epilepsy management guidelines is problematic. Inconsistent and uncoordinated services continue, demonstrating the urgent need for improved continuity of care [5,17]. Although the NICE guidelines include ‘outline care algorithms’ for adults and children, different service providers adopt different approaches to care planning [18]. Within Australia, it is recognized that there is an urgent need for the NICE guidelines to be more widely adopted [19] in order to ensure that all epilepsy management plans are developed within a person-centered framework and incorporate the individual's needs, preferences, and informed decision-making on their care and treatment. The aim of the current study was to explore the extent to which people with epilepsy and their family members within Australia are actively involved in the development of their epilepsy management plan and the support they receive from staff within the disability sector. Recommendations on ways to achieve greater choice and control in order to enhance person-centered epilepsy management in the disability sector are also discussed. 2. Methods An online survey was developed using SurveyMonkey to explore the experiences and needs of adults with epilepsy and their family around the development of epilepsy management plans. The survey included 24 questions requesting sociodemographic and diagnostic information, an adapted epilepsy knowledge scale, and details of their epilepsy management plan. This article reports on responses related to whether participants (or their family member) have an epilepsy management plan, when it was last updated, whether they were involved in writing the plan, the extent to which it includes their views on how they want to be supported, and how they would like to be involved in developing their plan (see online supplement). Responses to other questions including confidence in managing their epilepsy, as well as factors influencing their confidence levels, will be reported elsewhere. Thirty disability and epilepsy organizations across each state and territory in Australia were contacted directly by the research team and asked to place an advertisement for the survey on their websites and newsletters to members. In addition, advertisements including the survey link were published in local and national newspapers and magazines (including ‘The Big Issue’). Criteria for participation specified
that respondents were over 18 years of age, either with epilepsy themselves or were family members to a child or adult with epilepsy. All survey responses were imported and analyzed using SPSS 20. Responses to open-ended questions were imported into NVivo10 where each response was read, discussed, and coded collaboratively by two researchers.
3. Results The survey was completed by 291 respondents, consisting of 118 adults with epilepsy and 171 family members (see Table 1). Family members reported on 99 children under 18 years of age, with parents as the most frequent respondents (n = 144, 84%). The mean age of family members was 43 years, ranging from 20 to 76 years. Sixty-two percent of the respondents were from Victoria, with other participants from New South Wales (15%), Queensland (9%), Western Australia (7%), South Australia (4%), Tasmania (2%), Australian Capital Territory (0.3%), and Northern Territory (0.3%). The age range of the 291 people with epilepsy represented in this sample was from infant to 79 years (mean: 26.7, 17 missing), with 167 (58%) females with epilepsy. Table 2 illustrates that just over half of all respondents (n = 142, 51%) indicated that the person with epilepsy (either themselves or their family member) had a substantially reduced capacity in communication, social interaction, learning, mobility, self-care, or self-management (12 missing). This population could be described as having a severe or profound core activity limitation, defined as sometimes or always requiring personal help or supervision with core activities of self-care, mobility, and communication [20]. This question was included to provide an indication of whether the respondent might be eligible for the newly introduced Australian National Disability Insurance Scheme and inform the development of resources targeted for this population. It also provides a point of comparison between respondents with and those without high levels of self-reported disability. Respondents were asked to identify the person with epilepsy's main disability type from a presented list. ‘Neurological disability’ was the most common across all groups. Those who indicated a ‘severe core activity limitation’ reported higher rates of intellectual disability, physical disability, and autism spectrum as their primary disability compared with those who did not. There is a small but statistically significant difference between the mean ages of the persons with epilepsy within the two groups. Those with a severe core activity limitation were, on average, 24 years of age, whereas those without a severe core activity limitation were, on average, 30 years of age. Over half of the respondents from each group indicated that epilepsy had been diagnosed for longer than 11 years, indicating long-term experiences in managing and living with the effects of epilepsy in both cohorts. Just over half of all respondents indicated that they (or their family member with epilepsy) had an epilepsy management plan (57%). This figure was slightly higher for those with a severe core activity limitation (65%) and dropped to only 50% for those without when separated into the two groups. Children were more likely to have an epilepsy management plan than adults, particularly when there was no severe core activity limitation. Reassuringly, of those who indicated that they had Table 1 Survey participants by respondent category. Number of respondents
Person with epilepsy Family membera Not indicated Total a b
b18 yearsa
N18 years
Totalb
– 99 – 99 (36%)
107 67 1 175 (64%)
118 (41%) 171 (59%) 2 291
Family member reporting on child under 18 years of age. 17 respondents did not indicate age.
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Table 2 Demographic and diagnostic details of persons with epilepsy according to level of disability. Mean age of persons with epilepsy (SD)
Severe core activity limitation (n = 142)
No severe core activity limitation (n = 137) 30 (17.8)b
24 (18.1)
Primary disability Neurological Intellectual Physical Autism spectrum Mental health Sensory Missing Time since epilepsy diagnosis b1 year 1–5 years 6–10 years 11–20 years N20 years Missing Has an epilepsy management plan Yes No Unsure Missing Last updated b1 year ago 1–2 years ago N2 years ago Not sure Missing a b c d e f
b18 years (n = 39)
N18 years (n = 90)
Totald
86 (61%) 26 (18%) 14 (10%) 9 (6%) 2 (1%) 2 (1%) 3 (2%)
30 3 2 1 – –
70 5f 5 – 2 2
108 (79%)e 10 (7.3%) 7 (5%) 1 (1%) 3 (2%) 3 (2%) 5 (4%)
1 11 8 20 40
10 (8%) 38 (27%) 23 (16%) 31 (22%) 42 (30%) 2
11 21 6 1 –
4 11 12 27 36
16 (12%) 34 (25%) 18 (13%) 30 (22%) 39 (29%) –
28 (9%) 74 (25%) 41 (14%) 63 (22%) 83 (29%)
43 6 3
46 16 6
92 (65%) 23 (16%) 9 (6%) 18 (13%)
36 1 1
28e 42 13
69 (50%)e 45 (33%)e 14 (10%) 9 (7%)
165 (57%) 69 (24%) 25 (9%) 32 (11%)
41 4 – 1
34 6 3 2
75 (82%) 10 (11%) 3 (3%) 3 (3%) 1 (1%)
31 4 1 1
25 3 1 13
58 (84%) 8 (12%) 3 (4%) – –
136 (83%) 19 (12%) 6 (4%) 3 (2%) 1 (1%)
b18 years (n = 57)
N18 years (n = 76)
Total
37 10 5 2 1 –
39 14 8 7 1 2
8 26 14 9 –
Table 3 Level of direct involvement of persons with epilepsy or family members in developing their epilepsy management plan.
Were you directly involved in writing your plan? (Yes) Person with epilepsy Family membera of child b18 years of adult N18 years Total Does your plan include your views on how you want to be supported? (Yes) Person with epilepsy Family member of child b18 years of adult N18 years Total b c
c
198 (68%) 38 (13%) 21 (7%) 10 (3%) 5 (2%) 5 (2%) 14 (5%)
12 respondents did not indicate level of disability. Statistically significant difference at p b 0.01 using the independent samples t-test. 9 respondents did not indicate age. 8 respondents did not indicate age. Statistically significant difference at p b 0.01 using the chi-squared test for independence (with Yates' continuity correction). 5 self-respondents indicated that they had an intellectual disability, 4 without severe core activity limitation and 1 not indicated.
an epilepsy management plan, the majority were updated within the past 12 months (83%), with only 12% between 1 and 2 years and 4% longer than 2 years. Responses by participants who indicated that they (or their family member) had an epilepsy management plan were further analyzed
a
Total (n = 291)a
17 did not indicate age. 3 did not indicate disability severity. 2 did not indicate disability severity.
Severe core activity limitation (n = 92)
No severe core activity limitation (n = 69)
Total (n = 165)
11 (12%) 70 (76%) 38 32 81 (88%)
20 (29%) 40 (58%) 6 33 60 (87%)
31 (19%) 113 (69%)b
9 (10%) 54 (59%) 27 26 63 (69%)
16 (23%) 28 (41%) 22 6 44 (64%)
144 (87%)
25 (15%) 84 (51%)c
109 (66%)
to determine their level of direct involvement (Table 3). Each group indicated similar high levels of engagement, with a total of 87% indicating that they were directly involved in writing their (own or family member's) plan. There was a difference between the levels of family involvement according to disability severity, with 76% of the family members directly involved when there was a severe core activity limitation in contrast to only 58% when there was not. Although not statistically significant, this is not surprising and could reflect the active involvement of family in health management decisions when there are higher levels of disability. Fewer respondents indicated that their epilepsy management plan included their views on how support will be provided (66%). Similar trends are seen to the previous question, with an almost 20% higher inclusion of family views when there is a severe limitation. A total of 111 open-ended responses were received, providing details on how people with epilepsy and family members would like to be involved in developing their epilepsy management plan. Responses were grouped into a range of themes (Table 4), indicating a desire for a specific role; general comments indicating active interest in involvement; and others which were unsure, not applicable, or not directly related to the question. 3.1. Role Almost half of all respondents (48%) directly indicated the role they would like to play in developing their (or their family member's) epilepsy management plan. Three clear roles emerged, including ‘team member’, ‘in charge’, and ‘leave it to the professionals’ which are explored below.
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Table 4 Open-ended responses to ‘How would you like to be involved in developing your epilepsy management plan?’. Themes
Preferred role Team member In charge Leave it to the professionals General active interest in involvement Unsure N/A Other a
One comment further illustrates the importance of actively including the person with epilepsy in the presence of significant disability: ‘Fully involved despite his limited communication.’ (#26; sister of a 31-year-old with epilepsy)
Number of respondents Persons with epilepsy n = 41
Family n = 68
8 (20%) 5 (12%) 1 (2%) 7 (17%) 7 (2%) 0 12 (29%)
32 (47%) 7 (10%) 0 9 (13%) 7 (10%) 4 (6%) 10 (15%)
Total n = 111
Parents of adults with epilepsy also shared their desire to be actively involved in writing the plan: 40 (36%) 13a (12%) 1 (1%) 17a (15%) 14 (13%) 4 (3%) 22 (20%)
One respondent did not indicate their identity.
3.1.1. Team member Most respondents (35%) indicated that they would like to have a collaborative role in the development of their own or family member's epilepsy management plan: ‘Be involved in how my plan is made is important to me as if I'm not involved it won't work well.’ (#257; female with epilepsy, 39 years old) ‘Write the plan and confirm with doctor it is appropriate.’ (#65; mother of a 33-year-old person with epilepsy) ‘In consultation with my neurologist!’ (#132; female with epilepsy, 28 years old) ‘Parents and support staff who know [name] well to help develop this plan.’ (#115; mother of a 27-year-old person with epilepsy)
‘My son has a profound intellectual disability and I am aware of his needs as his Mum.’ (#142; mother of a 20-year-old person with epilepsy) 3.3. Unsure Fourteen (13%) respondents indicated that they were ‘not sure’ how they would like to be involved, with six expressing that they were not sure what an epilepsy management plan was: ‘Not sure where or how to do a plan.’ (#29; mother of a 21-year-old person with epilepsy) ‘I have had epilepsy all these years and never heard of a management plan and don't know what it is.’ (#276; female epilepsy, 58 years old) Another 2 respondents indicated that they had never been asked about an epilepsy management plan: ‘This has never been discussed with me.’ (#118; mother of a 7-year-old person with epilepsy) ‘A plan has never being offered by neurologists or GPs. Just increase or change medication, have X-rays to see how damaged the brain is!!!!’ (#286; husband of a 72-year-old person with epilepsy)
A range of comments specifically related to the need to be listened to and have their own views incorporated into the plan:
3.4. Not applicable ‘Just asked my views.’ (#48; mother of a 31-year-old person with epilepsy) ‘Dr.'s need to listen to the family's input before drafting written material.’ (#88; mother of a 9-year-old person with epilepsy) ‘She would like to be involved by having her opinion/position heard about her experiences and how they make her feel.’ (#272; primary care giver of a 65-year-old female with epilepsy) 3.1.2. In charge Another 12% of the respondents articulated the desire to have more active control and be in charge or direct the development of their plan: ‘Main decision maker.’ (#47; identity and age unspecified) ‘I would like to be in charge.’ (#5; female with epilepsy, 32 years old) 3.1.3. Leave it up to the professionals Only one respondent wrote that they did not want any active involvement: ‘I would rather leave it up to the professionals.’ (#235; male with epilepsy, 26 years old) 3.2. Active interest A number of respondents (15%) answered this question by sharing their interest to be actively involved in the process, although they did not specifically state how: ‘Front and Center!’ (#220; mother of a 9-year-old person with epilepsy) ‘Across all aspects.’ (#149; female with epilepsy, 48 years old) ‘100% involved.’ (#202; mother of a 9-year-old person with epilepsy)
Only four family respondents stated that this question was not applicable, with two further indicating that the person with epilepsy was as follows: ‘Unable to communicate.’ (#126; mother of a 14-year-old person with epilepsy) or ‘Not capable of being involved due to intellectual delay.’ (#263; mother of a 12-year-old person with epilepsy) 3.5. Other Other comments did not directly relate to how people would like to be involved but reflected respondents' needs for further information: ‘Actually know what epilepsy is.’ (#274; female with epilepsy, 27 years old) ‘Be able to have more information.’ (#74; mother of a 6-year-old person with epilepsy) ‘All family members should be aware of the plan, as I have been present for many of my sister's seizures, but was never sure of what to do.’ (#192; sister of a 47-year-old person with epilepsy) as well as areas for additional support: ‘Information, and assistance with available sources and assistance both financially and academically.’ (#35; mother of a 16-year-old person with epilepsy) ‘Family support for respite.’ (#287; grandparent of a 1-year-old person with epilepsy) ‘Housing in the future.’ (#131; male with epilepsy, age not indicated)
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4. Discussion This unique study is the first to examine the extent of personcentered epilepsy practice in the Australian disability sector. Just over half (57%) of all respondents indicated that they (or their family member with epilepsy) had an epilepsy management plan. This was more commonly the case when the person with epilepsy had a severe core activity limitation (65%) in comparison with a lower level of disability (50%). Age also played an important role, with children more likely than adults to have an epilepsy management plan, particularly when there was a lower level of disability. The majority (83%) were reported to be up-to-date, reviewed within the past 12 months. The expressed need for more information about epilepsy and how to respond to seizures is of interest. These comments suggest a lack of understanding of epilepsy by both individuals and families. This information is required in plain English and accessible formats both for families and the person with severe disability or complex communication needs. Some respondents were not aware of the use or purpose of epilepsy management plans which suggests that a broader information and communication strategy may be required to raise awareness of the role such tools can play in providing greater choice and control to the person with epilepsy and empowering self-management. Sixty-three percent of the respondents also indicated in varying ways their desire to be actively involved in developing their own or family member's epilepsy management plan. Comments ranged from preferring a collaborative role to ‘being in charge’, as well as more general comments indicating a strong desire to be involved in the process. Family respondents strongly voiced their desire to be active team members when making decisions (47%). Person-centered planning in epilepsy management involves the active participation of the individual with epilepsy and their family. According to Elger and Schmidt [21], “People with epilepsy need empathy and sympathetic, holistic care that integrates science with the personal needs of the individual” (p. 538). A literature review of services that have introduced person-centered practices indicates that increased choice and control have resulted in positive outcomes in the health, well-being, and social participation of people with disability, their families, and carers in addition to being cost-effective [22]. All Australian states and territories have legislative requirements to practice person-centered approaches. The current Australian National Standards for Disability Services stipulate that disability service providers meet the individual needs of the person with a disability, with personalized plans developed with each service user (Standard 3: individual outcomes) [23]. These National Standards were revised in December 2013, with increasing emphasis placed on active engagement with people with disability and, where agreed, their supporters to plan and review service and support delivery. Implementing person-centered planning (PCP) requires professionals to address the issue of client empowerment, which, for many, is an uncomfortable and radical change [24,25]. For PCP to succeed, it must be practiced at all levels within an organization or service, with staff attitudes and values aligned to empowering clients to be involved in making decisions which affect their own lives. Although definitions vary, the underlying principle of epilepsy self-management is that the daily management of the condition is handled by the patient rather than by a health-care provider, with a positive relationship between health care/individual/family integral to promoting comprehensive care and improved outcomes [26]. It is acknowledged that epilepsy management should include the views of both the physician and the person with epilepsy [27]; however, people with epilepsy have reported that they would like greater involvement in discussions regarding their treatment and to be more actively involved in planning their seizure management [28]. In this sample, patients tended to be less proactive, waiting instead until their doctor initiated or raised issues. Improving self-management of epilepsy and increasing proactive patient–doctor interactions are
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important areas for development and reinforce findings from the current study. In contrast, diabetes has been well established as a self-managed illness, which involves the patient making the decisions that most affect their health and well-being. In Anderson and Funnell's review [29], collaboration between the person with diabetes and their health-care professional needs to be emphasized, and the focus on ‘compliance’ needs to be minimized as this tends to result in conflict and tension within health management. In order to achieve a collaborative approach to developing diabetes self-management plans, the authors promote a shift towards an ‘empowerment paradigm’, whereby professionals “change from feeling responsible for patients to feeling responsible to patients” (p. 155). Other studies by the same authors also demonstrate positive results from diabetes interventions centered in patient empowerment [30,31]. People living with epilepsy usually have seizures at unpredictable times and frequency, which varies from individual to individual. It is, therefore, crucial that everyone who supports the person understands the uniqueness of the individual's epilepsy and how the person wants to be supported with their epilepsy and seizures. A good epilepsy management plan documents the person's seizure types, support needs, and emergency procedures with the person with epilepsy being an integral part of the development process. The key elements include the following: • the person understands their epilepsy • the person and their circle of support have been actively involved in decision-making • staff are educated and trained in epilepsy management • staff are confident in supporting the person • there are clearly established communication pathways between all the relevant services and the person's key supporters • service providers have policies and procedures that meet the needs of the person and provide a safe and healthy environment, which enables the person to participate to their full potential and identifies opportunities to refer people to relevant services. A number of limitations are acknowledged within this study. Primarily, survey respondents were self-selected and provided selfreported data which introduced inherent bias. The population was broadly diverse, including people with and those without severe disabilities, with limited clinical data available. In addition, low response numbers and unbalanced state representation limit the generalizability of these findings and present a heavy bias towards Victorian experiences. However, these data present themes which are very consistent across respondents and a source of rich personal experience enabling discussion and exploration on the implications for practice. 5. Conclusion This study has explored the extent to which people with epilepsy (and their family) are actively involved in making informed decisions about how their epilepsy is managed and supported which impacts their own lives. Person-centered planning in self-management incorporates the views and goals of the individual, ensuring that decisions are made collaboratively. Responses from this study indicate that people with epilepsy want to be more involved in discussions about how their epilepsy is managed and supported and be more actively involved in planning their seizure management. For this to succeed, ongoing staff training on the principles and techniques of PCP is needed, as well as increased epilepsy education and adoption of management guidelines and plans which support the proactive involvement of people with a disability and their family that enables people with a disability to exercise choice and control in living their lives to the fullest.
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Acknowledgments This research was undertaken by the Epilepsy Foundation and funded through a Practical Design Fund from the Australian Government Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), with ethics approval granted by the Flinders Social and Behavioural Research Ethics Committee (Project No. 5965). Sincere thanks are due to Peter Cookson for proofreading support. This research was used to inform the development of epilepsy resources for use under the Australian National Disability Insurance Scheme which included the following suite of resources that can be accessed via www.epinet.org.au including: 1. 2. 3. 4. 5. 6.
Learning About Epilepsy: an easy English resource Developing an EMP: a resource for support workers and families My Epilepsy Review: an easy English resource Epilepsy Management Plan Electronic Template Emergency Medication Management Plan Electronic Templates Epilepsy Management in the Disability Sector: a resource for better practice.
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