An individual ability to meet the demands of daily life

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an individual ability to meet the demands of daily life

Life. Events. Bad things happen. Cars crash. Close friends and relatives die. cope well, continue to meet the demands of their daily lives, and recover fully. with a person's ability to work, study, relate to others, and maintain usual routine. works, and travels that have sharply reduced the physical demands of daily life. factors that affect the individual's choices about engaging in physical activity. . on their inclinations to meet recommended levels of total daily physical activity. .. end of the day, lack of confidence in their athletic ability, and family priorities. Older adults can meet the Guidelines by doing relatively moderate-intensity activity, . When a person has lost some ability to do a task of everyday life, such as.

Whether an individual is physically active depends on demographic characteristics such as gender, age, and ethnic background, and on socioeconomic characteristics such as education and income level. It also depends on at least three other factors, the latter two of which are external to the individual: Examining the Evidence -- Special Report The National Academies Press. Each of these factors is discussed in turn in this section.

Much of the discussion is based on self-reported survey data and focus groups. Relative to observational surveys, self-reported data often provide unreliable estimates because of problems with recall or the well-established tendency of survey respondents to give socially desirable rather than completely truthful answers see Chapter 2.

Results from focus groups cannot be generalized to the population at large.

Chapter 5: Active Older Adults

Nevertheless, self-reports and focus groups are the only way to obtain insight into attitudes and motivations that help explain behavior. This type of information is particularly important because the determinants of physical activity behavior are not well understood.

Although comparisons by race are often obscured by socioeconomic variables, some studies have shown that ethnic minorities, particularly African American and Hispanic women, are less likely to adopt and maintain active lifestyles. Page 87 Share Suggested Citation: Further elaboration is not provided here because the committee has chosen to focus its discussion on physical activity behaviors linked with the built environment, such as nonmotorized travel and attitudes toward walking and cycling.

Two of the surveys were sponsored by organizations that advocate walking and cycling—the Surface Transportation Policy Project and America Bikes. A national survey of walking and cycling sponsored by the National Highway Traffic Safety Administration and the Bureau of Transportation Statistics BTS and administered by the Gallup Organization during summer found that 8 of 10 respondents aged 16 or older had taken at least one walk of 5 minutes or longer in the past 30 days; fewer than 30 percent, however, reported having ridden a bicycle at least once DOT When asked the primary purpose for walking trips, respondents most commonly cited exercise or health reasons 27 percentpersonal errands 17 percentand recreation 15 percent.

The primary purposes for cycling trips were recreation 26 percent and exercise or health reasons 24 percent. For example, the respondent may have indicated commuting to school or work as the primary trip purpose but may also have walked or cycled to work for exercise.

Thus, there is likely to be overlap among some of these responses. Page 88 Share Suggested Citation: Nearly 60 percent of those who walked, ran, or jogged about 40 percent of all respondents reported spending about 30 minutes on these activities an average of 13 days per month, as compared with the recommended minimum of 30 minutes per day of moderate-intensity activity on 5 or more days per week see Chapter 2.

Nearly 20 percent of respondents reported a longer duration of activity, but 40 percent reported no outside walking, running, or jogging BTS The Omnibus survey also inquired about the reasons for walking and cycling.

Slightly more than three-quarters of those respondents who walked, ran, or jogged reported that they did so 5 The survey was conducted by telephone and used a random sample of listed and unlisted numbers in the 50 states and the District of Columbia, which yielded 9, interviews with respondents aged 16 years or older, a 27 percent response rate. Approximately 1, randomly selected households are telephoned each month, and the results are weighted to allow inferences about the U.

Periodically, questions are added for specific purposes, such as this survey of walking and cycling behavior. The walking survey was conducted from January to November and the cycling survey from October to September Page 89 Share Suggested Citation: Another 15 percent walked for personal errands, and only 7 percent to get to work or as part of their job BTS1. In sum, the surveys indicate that walking is more prevalent than cycling, but reported levels of walking appear to fall short of recommended daily guidelines.

To the extent that Americans report walking and cycling, the primary reasons appear to be for exercise and recreation. These results correspond with the behavioral data from public health surveys discussed in the previous chapter showing a trend toward increased leisure-time physical activity.

Market research has also been conducted to probe the reasons for engaging in physical activity. Focus groups with older Americans revealed similar beliefs. The positive health effects of physical activity may have been assumed by the survey and focus group respondents, but the results may also reflect the value placed by many people on more immediate benefits, such as those enumerated above.

Compromised social participation had to do with limited ability to meet with others, feeling socially isolated, social embarrassment, and speech problems. Limited ability to meet with others and decreased activities in daily life were common.

Not being able to drive was problematic as it made it more difficult to get around. Using public transportation required planning and was regarded as inconvenient. Other activities that were affected were holding cards whilst playing bridge, outings in the countryside, riding, playing football, or going out dancing.

It was also difficult to manage stairs, to go in and out of shops, do the shopping, and other daily activities. Participant 10 Feeling socially isolated and being alone was hard. Even if it sometimes was preferable to be alone, there was also a feeling of being avoided, even by close friends.

Participants often wished something would happen to break the silence of their secluded life, for example, a phone call or a letter. Even if there was only a bill it was read thoroughly as a strategy to feel connected to the outer world.

The Impact of Living with Parkinson’s Disease: Balancing within a Web of Needs and Demands

Participant 9 The participants described social embarrassments as their facial expressions and nonverbal communication were reduced. Involuntary movements were a problem, for example, when having dinner with family and friends. Glasses and cups could suddenly be knocked over, tremors made it difficult to use cutlery and handling food or drink. Eating was time-consuming, and they felt embarrassed by keeping others waiting. They felt bitter at having the disease, which made them try to hide their symptoms.

It was like … when I had customers … and they sort of … why do you walk so funny? Participant 8 Speech problems were frustrating to the point where some stopped talking altogether, and others found it difficult to articulate. Being nervous or stressed tended to make it worse. These problems could make it impossible to speak on the phone, and consequently people stopped calling. And I understand that …. I find it equally … equally embarrassing…. The Use of Practical and Psychological Strategies The participants used different strategies to adapt to various situations.

Trying to find practical solutions were most common, for example, seeking information, planning, and using aids. Practical and psychological strategies used were to be able to foresee and plan, to compensate for lost functioning, trying to maintain a positive attitude, using downward comparisons, and accepting support from health care.

To be foreseeing and plan was necessary when managing everyday life. Most things took more time, and those with cognitive difficulties needed detailed planning, taking notes, and doing things step-by-step. Medication required a great deal of planning and most participants followed a schedule. Even though all precautions were taken, it was still uncertain if they would manage to go through with their plans due to the unpredictability of the disease.

They felt embarrassed when they had to cancel at the last minute. Participant 5 Various compensatory strategies were applied to compensate for lost functioning, for example, doing chores sitting down instead of standing up or to avoid reaching for things.

Several situations were avoided altogether to minimise the risk of falling and being injured, for example, to shower instead of taking a bath. Some also chose to pay for the services that they were unable to do, for example, cooking and cleaning. I can take care of my personal hygiene.

Participant 9 Trying to maintain a positive attitude was used to feel psychologically better, for example, trying to be optimistic, not to worry, enjoying the moment, making the best of the situation, trying to live life as normally as possible, and pushing all thoughts of the future aside.

PD could progress in so many ways that they found it best to settle for what little they had and make the most of every moment. Some described the importance of fighting back and not giving up. For example, thinking of children and grandchildren was also helpful in finding enough strength to keep on living. Because you become sort of … you look at life differently and become more grateful…. Participant 14 The participants were using downward comparisons, comparing themselves with those worse off, for example, while attending support group meetings.

This strategy was helpful in realising that they still functioned relatively well, given the circumstances.

an individual ability to meet the demands of daily life

However, others described the opposite reaction as it could make them worried and anxious that they might end up in a similar situation. Well, of course you compare yourself with others …. Participant 8 The participants also used self-deception, that is, convincing themselves that things were not as bad as they might seem.

Accepting healthcare support was important in managing the situation, even if accessibility was an issue. They wished that it would be possible to have one person to turn to for support and felt that the time between scheduled clinic visits was too long.

Participant 1 To use various kinds of aids was important, such as alarm devices to remind them when to take their medicines or a special chair to use in the shower.

To be able to manoeuvre a wheelchair with a remote control improved independence. Some also found the use of a cane to be supportive, whereas others could consider walking aids as stigmatizing. However, using some of these aids, for example, a walker could be difficult in bad weather, such as snow or if there were stairs. The results showed that living with PD incorporated a complex web of changed prerequisites for managing day-to-day demands and social participation, which in turn contributed to a perceived loss of identity and dignity.

Living with PD also involved developing practical and psychological strategies to cope with the situation.

an individual ability to meet the demands of daily life

These results may be thought of as a delicate balance within a web of needs and demands. Psychological symptoms and mood swings were intertwined with cognitive and physical problems, adding to the struggle of managing the demands of everyday life.

The participants felt depressed, low-spirited, and were worried about the future. Some held dark and destructive thoughts and considered intentionally ending their lives.

In a previous study, suicidal and death ideation was present among one-third of persons with PD [ 25 ]. Depression is one of the most common nonmotor symptoms in PD [ 1 ] and has considerable impact on health-related quality of life [ 56 ]. The physical changes also affected appearance. To look different provoked a sense of vulnerability due to feeling judged and evaluated by strangers.

Those who suffered from tremor or balance impairments could be thought of as being intoxicated or worse. In agreement with earlier studies [ 172627 ], this was found embarrassing and made participants feel deprived of their self-worth and shameful as they could no longer live up to social norms.

The results can be interpreted as a shift from an internal towards an external locus of control, in order to manage their sense of lost control and unpredictability, as the disease progressed Figure 1. According to self-determination theory SDT [ 2829 ], this shift and the described distress and helplessness may be the result of thwarted basic needs. When these needs become thwarted, a shift towards extrinsically motivated behaviours may occur.

Interestingly, shifting locus of control and thwarted basic needs have been found to predict poor psychological well-being, depression, and ill health [ 2829 ].

SDT may thus help provide a deeper understanding of the complexity of the impact of living with PD, as the social conditions and other aspects that needed to be managed become more challenging as the disease progressed. Balancing within a web of needs and demands. Nevertheless, rather than a separable multidimensional array of disease manifestations, symptoms, and problems, these and other aspects are intermingled and appear to form a unity where all parts are facets of a single dimension of the impact of living with PD.

This is similar to the findings in a previous study where PwPD and health care professionals HCPs conceptually mapped out the interrelationships among aspects deemed important to consider when evaluating interventional outcomes in PD [ 30 ].

This finding was strengthened in the present study, suggesting that the impact of PD from a patient perspective may be described as unidimensional but heterogeneous. Moreover, the impact as described here was largely expressed in terms of unmet needs that change over time, followed by different adaptation strategies.

This has implications in terms of person-centred outcome measurement and supports a needs-based quality of life model [ 31 — 33 ]. This suggests that the impact of PD as well as needs-based outcomes may be interpreted in relation to SDT.

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The changed ability to take part in various social activities restricted interactions with family, friends, and others. These aspects had consequences for the psychological and emotional aspects of reduced self-worth and the social identity. To facilitate meeting the needs and demands of everyday life, problem-focused and emotion-focused strategies were used to reduce stress and worry and to facilitate adaptation in various situations [ 3435 ].

However, for some, it was not always realistic to expect that everything would go according to plan. To be able to foresee possible problems and to plan ahead gave the participants a sense of control over the situation, but also reduced the possibility of acting spontaneously [ 16 ]. To maintain a positive attitude was one emotion-focused strategy that facilitated emotional balance and well-being.

Some found new acquaintances in new contexts, for example, in a PD association, where they met others in similar situations.

However, although some were comforted by being able to help those who were worse off, it could also be distressing for those who were afraid of ending up in a similar situation, which has been reported previously [ 3637 ].

The physical challenges and perceived distress in managing everyday activities and participating in society appear to be similar across different brain disorders [ 38 ]. It may thus well be that two persons with different disorders can have more in common than two persons with the same diagnosis, as their challenges not only relate to their health conditions. Therefore, the experienced impact of various disorders may be better represented by use of a needs-based rather than a function or symptom-based approach [ 31 — 33 ].

Arguably, the needs-based approach may also be beneficial from a clinical perspective, by being better positioned to facilitate a more person-centred care. This is in general agreement with the theory and empirical experiences of SDT [ 2829 ]. Our findings illustrate the value of qualitative inquiry in order to gain a deeper knowledge and understanding of the impact of long-term illness from a patient perspective.

Such information may also lay the foundations for novel and more person-centred outcome measures. However, these two fundamental components do not appear to have been widely integrated in the development patient-reported outcome measures for PD [ 40 — 45 ].

Conclusion We have found the impact of living with PD to be a complex unity of intermingled symptoms and problems that entail a balance within a web of needs and demands.

Seen from this perspective, we suggest that a needs-based approach represents an important starting point to better understanding the consequences of living with PD and to explore the means for people with PD to acquire an improved quality of life on their own terms. This has important implications for understanding living with PD, as well as for designing improved and more person-centred interventions and outcome measures.

Data Availability Anonymized original data may be obtained at the discretion of the corresponding author upon request. Conflicts of Interest The authors declare that there are no conflicts of interest regarding the publication of this article.

Acknowledgments The authors wish to thank all participating patients for their cooperation, Dr. James Suckling for linguistic review of the manuscript.

Relationship to health-related quality of life.