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Table 2 Results of scoping review of consumer perceived other service needs related to osteoarthritis

From: Person-centred care in osteoarthritis and inflammatory arthritis: a scoping review of people’s needs outside of healthcare

Author, Year Results
ACTIVITIES OF LIVING BOTH INSIDE AND OUTSIDE THE HOME
 Ackerman (2013) [21] • Cannot get out of house without assistance
• Difficulties walking due to OA, limited mobility
 Al-Taiar (2013) [22] • Inability to do household chores, mobility limitation
• Many participants have domestic helpers
• “Failure” to fulfil obligation to take care of the family despite their pain/mobility limitation; feeling helpless/less valuable
 Bergsten (2011) [35] • Need for support from family and friends when doing household duties, personal care or everyday activities
• Struggling to accept help from others; wanting to do more
 Bukhave & Huniche (2014) [24] • Difficulty handling small objects e.g. cutlery, glasses, gadgets, chargers, plugs and devices for connecting gadgets to power supplies, computers, cell phones (especially if buttons too small), money and payment systems (credit cards easier)
• Difficulties determined by design/operation of the actual gadget
• Dependency on help from others (partners most important providers of support), particularly with respect to the performing of household chores and self-care (grooming, hair dryers, buttons, tying shoes)
• Singles with small networks experienced huge challenges
• Need for external help at time; expensive
• Importance of good grooming to participants
• Special equipment, assistive devices or orthoses can improve performance; e.g. self-adapted knife
 Chan (2011) [25] • Reliant on support from the family or paid supports
• Need to be accompanied by others when going out
 Hill (2010) [27] • Limited function in day-to-day activities including self-care activities 66% (cutting fingernails, drying after showering, toileting)
• Difficulties with opening packaging, peeling fruit and vegetables, cutting
• Limitation of hobbies/past times
• Gender differences: men reported difficulties with manual work and particular hobbies (fishing, car mechanics), women reported difficulties with home-making tasks (housework, cooking)
• Feelings of “frustration” at inability to do things in 55%; may lead to depression
• Transitioning from normal function “taking it for granted”; loss of identify/sense of self because of being unable to do things previously done
• Inability to conform to social norms due to functional constraints causing embarrassment/self-consciousness
• Utility of assistive devices/adaptations to improve function and independence
 Kjeken (2013) [29] • Strategies to improve function in daily activities:
• Assistive devices: opening packaging, cutting food
• Adapting tools/materials/working techniques: e.g. facilitating lifting/carrying, housework, opening packaging
• Practice activity pacing: planning daily activities and rest breaks to enable task completion
• Stop or avoiding certain activities
• Importance of positive thinking in completing tasks: focussing on what you can do, not pain or limitation, perseverance
• Communication: ask/apply/pay for help, telling people about needs/problems
 Neville (1999) [31] • 75% report needing more help carrying out daily tasks
 Tanimura (2011) [32] • Restriction of daily activities 70.5%
• Taking more time to complete daily activities 66%
• Difficulty sitting on traditional straw matting (“tatami”) 94.7%, sitting up/squatting down 93.7%, going up or downstairs 61.2%, sitting in same position for extended periods 93.1%, carrying heavy objects (88.4%)
SOCIAL PARTICIPATION NEEDS
 Al-Taiar, (2013) [22] • Mobility restriction affects social life (including attending events like weddings)
• Whole family affected rather than leave participant at home alone; especially young children/teenagers requiring supervision
 Baumann et al., (2007) [23] • Emotional distress as well as physical limitations; difficulty communicating struggle with family or doctors
• Unrecognised disability; lack of recognition by family and friends (not seeing OA as a “real” disease), community (e.g. access to disability permits), lack of OA-related research and media coverage
• Importance of support from others with the same condition; “It’s so nice to feel you are not the only one suffering”
 Bukhave & Huniche, (2014) [24] • Limited participation in activities requiring withdrawal from group activities (e.g. skiing, canoeing, dancing, woodwork and holding dinner parties) resulting in reduction of social network
• Difficulty caring for grandchildren, including lifting and carrying children
 Chan, (2011) [25] • May have to cut down or abstain from social activities
• Often limited choice of social activities depending on available transportation and walking distance
• Difficulty playing with/looking after grandchildren
 Ilori (2016) [26] • Social support most commonly provided by children (68.8%)
• Perceptions of “good health” significantly more common in those with strong support from family (69.9%) and friends (71.6%) cf. those with weak support from family (47.1%) or friends (59.6%)
• High functional health significantly more common in those with strong support from family, friends and significant other than those with weak support.
 Hill (2010) [27] • Unable to conform to social norms due to functional constraints, causing feelings of embarrassment
• Comparison with others made people more aware of disability, but sometimes reminded people that others were worse off
 Leung et al. (2019) [30] • Hand OA had significant impact on ability to participate in social roles in 33.3%, emotional health and mood in 28.9%, ability to participate in social ability in 31.1% and appearance of hands/self-image in 37.8%
 Neville (1999) [31] • 20% of OA patients interested in a self-help group
 Tanimura (2011) [32] • Lack of recognition of knee pain by others 58.2%
FINANCIAL NEEDS AND SECURITY
 Chan (2011) [25] • Monetary costs of treatments affect health seeking behaviour
 Hill (2010) [27] • 2/29 forced to retire from work due to hand problems; significant financial implications of giving up work
• Struggling to handle money and write cheques due to hand OA
 Kao (2014) [28] • Reduction of work affecting household income (87.5% labourers); 61.5% were the main income earner
OCCUPATIONAL NEEDS
 Bukhave & Huniche (2014) [24] • Struggle to keep working until retirement age
• Some had option for flexibility in arrangements with employers; depends on individual work demands, may need to change to a job where demands match hand function
• Often lack of adaptation of work environment and technical aids, and lack of knowledge concerning workplace adaptations and technical aids that could have been offered by the employer
• Flexibility important
 Chan (2011) [25] • Impacts on work life included: tiring easily, feeling inconvenient, less efficient, need to take sick leave, need to quit job, fewer business trips / do less business
• Some forced to change job/resign/early retirement
 Kao (2014) [28] • Need to reduce work, adjust work content and exchange work
• Limitation of work due to pain
 Leung et al. (2019) [30] • Hand OA had a significant impact on work productivity in 33.3%
EXERCISE AND LEISURE-RELATED NEEDS
 Al-Taiar (2013) [22] • Restriction of leisure activities of the whole family due to patient’s disability
 Bukhave & Huniche (2014) [24] • Need to change/avoid exercise, replacing lost activities with more manageable ones e.g. aqua gymnastics
• More sedentary/passive activities (e.g. watching TV); difficulties with many activities e.g. golf, skiing, canoeing, fishing, bicycling, gardening, knitting, sewing, and holding books while reading
 Chan (2011) [25] • Inability to do exercise a major concern; some needed to give up recreational/social activities altogether
 Kao (2014) [28] • Exercise limitation due to pain
• Need to choose mode of exercise carefully and change to different activities
 Tanimura (2011) [32] • Incapable of pursuing hobbies/challenges 68.8%
• Incapable of attending local activities 80.4%
TRANSPORT NEEDS AND ENVIRONMENTAL MODIFICATION
 Ackerman et al. (2013) [21] • Transport difficulties in 22%
 Bukhave & Huniche (2014) [24] • Difficulty with handling the shift, holding on to the steering wheel, opening doors and the boot and handling the petrol cap of a car
• Difficulty riding a bike e.g. hand brakes, shifting gears, lamps and locks
• Difficulty with public transport e.g. holding on to straps or poles during exacerbating pain/other symptoms
 Chan (2011) [25] • Difficulty going out, particularly taking public transport; worsens with disease progression
• Lack of suitable public transport facilities
• Use of walking sticks
 Kao (2014) [28] • Did not enjoy travelling, especially getting in and out of the car
• Pain an inconvenience e.g. climbing stairs, needing to look for seated toilets
• Need to use analgesia prior to outings