The Lived Experience of Caregiving and Perception of Service Provision among Family-Caregivers of People with Late-Stage Parkinson's: A Qualitative Study.

Background: The complex nature of late-stage Parkinson's requires multiagency support and leads to an increased burden on family members who assume a multiplicity of responsibilities. The aim of this study is to further understand the lived experiences of family-caregivers and their perception of, and satisfaction with, service provision. Methods: This qualitative substudy was a part of the European multicentre Care of Late-Stage Parkinsonism (CLaSP) project. Purposive sampling resulted in a sample of eleven family-caregivers of people with late-stage Parkinson's, who were interviewed using semistructured open-ended questions. Thematic analysis followed. Findings. Three overarching themes were developed from the data: ensuring continuous support is vital to providing care at home, perceiving unmet service provision needs, and advocating and co-ordinating all aspects of care take their toll. These themes include not only experience of services that caregivers find supportive in order to deliver care but also of disjointed care between multiple agencies, a perceived lack of Parkinson's expertise, and there was a lack of anticipatory future planning. The constancy and scope of the family-caregiver role is described, including the need to project manage multiple aspects of care with multiple agencies, to be an advocate, and to assume new roles such as managing finances. Multiple losses were reported, which in part was mitigated by gaining expertise through information and support from professionals and organised and informal support. Conclusion: The intricacies and consequences of the family-caregivers' role and their experience of service provision indicate the need to acknowledge and consider their role and needs, fully involve them in consultations and provide information and joined-up support to improve their well-being, and ensure their continuous significant contribution to the ongoing care of the person with Parkinson's.

Perspectives on Care for Late-Stage Parkinson's Disease.

In the late stage of Parkinson's disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and social services systems. The aim of this study was to explore experiences of late-stage PD patients' and their informal caregivers' satisfaction with care and support, in order to better understand how they perceive the treatment and care they receive. This qualitative substudy was part of the longitudinal European multicentre Care of Late Stage Parkinsonism (CLaSP) project. Individual semistructured interviews were conducted with patients (n = 11) and informal caregivers (n = 9) in Sweden. Data were analysed through the content analysis technique. The final analyses generated one main category: "We are trying to get by both with and without the formal care" and five subcategories: "Availability of health care is important for managing symptoms and everyday life"; "Dependence on others and scheduled days form everyday life"; "There is a wish to get adequate help when it is needed"; "Mixed feelings on future housing and respite care"; and "Family responsibility and loyalty for a functioning everyday life". Having regular contact with PD-specialised health care was perceived as important. Greater access to physiotherapy was wished for. Maintaining autonomy was perceived as important by patients, in both home health care and a future residential care setting. Responsibility and loyalty between spouses and support from children enabled everyday life to carry on at home, indicating a vulnerability for those without an informal caregiver. The results suggest that regular access to PD-specialised health care is important and that a specialised and multidisciplinary approach to the management of PD symptomatology is likely necessary. Non-PD-specialised staff in home health care and residential care facilities should regularly be given opportunities to obtain PD-specific education and information.

"Am I representative (of my age)? No, I'm not"-Attitudes to technologies and technology development differ but unite individuals across rather than within generations.

While a broad spectrum of technologies is integrated in everyday life and routines, most research on ageing, health and technology has focused on attitudes toward and adoption of digital technologies including e-health, or home based monitoring systems. The aim of this study was to explore differences and similarities in attitudes and experiences with different types of technologies and development within and between three generations. We applied a qualitative, descriptive design and recruited a purposeful sample of participants from three generations (30-39, 50-59, 70-79 year old). The 25 participants took part in 3 x 2 focus groups. Forming four categories, the findings show that technologies enable as well as complicate everyday life. Participants expressed trust as well as uncertainty about risks when using technology and stated that use of digital services is required while support is limited. They identified that technology development is inevitable but not always in the service of users. In conclusion, experiences of and attitudes towards technologies and technology development are not limited to generation; perspectives sometimes unite individuals across rather than within generations. Thus future technologies and technology development, as well as services and policies aiming to support the use of said technologies should consider individual user perspectives including needs, desires, beliefs or goals neglected in the existing technology models, and involve users beyond generations defined by chronological age. Such strategies are likely to be more successful in supporting development of technologies usable for all.

Experiences of health services and unmet care needs of people with late-stage Parkinson's in England: A qualitative study.

AIM: To explore experiences of health services and unmet care needs by people with late-stage Parkinson's in England. METHOD: Ten participants, at Hoehn and Yahr stage 4 or 5, were interviewed using semi-structured open-ended questions. Data were analysed using qualitative thematic analysis. FINDINGS: Participants reported that whilst under the treatment of specialist hospitals, the majority of care provision had shifted into the community, often because hospital-based services were felt to be difficult to access and have limited benefit to them. When using health-care services, participants frequently experienced having to 'fit-in' to service structures that did not always accommodate their complex needs. Despite high levels of disability, participants expressed their desire to maintain their identity, normality of interests and activities in their lives, including remaining in their own homes. This was facilitated by bespoke care and equipment, and positive relationships with care providers. Knowledge on disease management was a key factor in their perceived ability to remain in control. Family caregivers had a central role in facilitating care at home. There was uncertainty about and little planning for the future, and moving to a residential nursing home was perceived an undesirable but potentially necessary option for future care. CONCLUSION: Unmet care needs identified by people with late stage Parkinson's in England include greater flexibility of healthcare structures and bespoke service provision, to accommodate their individual complex needs. Support in their own homes and positive relationships with healthcare providers help People with Parkinson's (PwP) to maintain a degree of normality and identity, and provision of information help them maintain some control. There is a need for more informed discussions on future care planning for this specific population.

Meaning of home and health dynamics among younger older people in Sweden.

Research has shown that positive evaluations of home are important for very old people's health, well-being and independence in daily life. The rationale for the present study derives from our survey study findings, confirming such associations also in a younger cohort (N = 371). The purpose of this study was to further increase the understanding of the dynamics of meaning of home and health among community-living healthy younger older people, in the present and in a projected future. Data were collected through semi-structured interviews with 13 persons aged 67-70 years living in ordinary housing in Sweden, followed by a qualitative content analysis. Findings suggest that the home becomes progressively important after retirement. Not only the immediate home environment but also local neighbourhoods influence perceptions about home. Home brings emotional and social benefits but also worries about how to cope with complex home ambivalence when reflecting upon future housing arrangements. The findings suggest that it is important to consider the role of perceived aspects of home for health and well-being in early phases of the ageing process. The findings could be used to raise awareness among policymakers, housing authorities and professionals involved in housing-related counselling.

The influence of participation on mortality in very old age among community-living people in Sweden.

BACKGROUND: Participation in everyday life and society is generally seen as essential for health-related outcomes and acknowledged to affect older people's well-being. AIMS: To investigate if aspects of performance- and togetherness-related participation influence on mortality among very old single living people in Sweden. METHODS: ENABLE-AGE Survey Study data involving single-living participants in Sweden (N = 314, aged 81-91 years), followed over 10 years were used. Multivariate Cox regression models adjusted for demographic and health-related variables were used to analyse specific items influencing mortality. RESULTS: Participation in performance- or togetherness-oriented activities was found to significantly influence mortality [HR 0.62 (0.44-0.88), P value 0.006, and HR 0.72 (0.53-0.97), P value 0.031, respectively]. Talking to neighbours and following local politics had a protective effect on mortality, speaking to relatives on the phone (CI 1.10-2.02) and performing leisure activities together with others (CI 1.10-2.00) had the opposite influence. That is, those performing the latter activities were significantly more likely to die earlier. DISCUSSION: The main contribution of this study is the facet of the results showing that aspects of performance- and togetherness-related participation have a protective effect on mortality in very old age. This is important knowledge for designing health promotion and preventive efforts for the ageing population. Moreover, it constitutes a contribution to the development of instruments capturing aspects of participation influencing on mortality. CONCLUSION: In the development of health promotion and preventive efforts the inclusion of participation facets could be considered in favour of potential positive influences on longevity.

Changes in Home and Health over Nine Years among very Old People in Latvia - Results from the ENABLE-AGE Project.

To meet the needs of an increasing, heterogeneous, ageing population it is imperative to understand links between home and health. In Latvia, only limited research targeting the health and home situation of very old people is available. Consequently, the aim of this study was to describe how the home environment and aspects of health have changed over nine years between 2002 and 2011 for very old people in Latvia, living in their home environment. This study is based on the Latvian part of the cross-national European ENABLE-AGE Project comprising data on objective, as well as perceived, aspects of home and health. Longitudinal data from those involved on both data collection occasions (N = 59) was used. At the nine-year follow-up, participants were between 86 and 90 years of age, still living in their own homes. The results show that not only health aspects varied along the ageing process, objective and perceived aspects of home also changed. The physical as well as the cognitive and emotional bonding to the home significantly increased i.e. aspects of meaning such as familiarity and feeling safe in your home, privacy and independence became more important for the very old participants over time. Life satisfaction increased over the years even though objective health factors decreased. Since aspects of home as well as health can be assumed to impact on the outcome of ageing, the situation for this age group in Latvia must be further studied in order to develop suitable and appropriate social and health services, policies and living conditions.

Community Relocation in Very Old Age: Changes in Housing Accessibility.

OBJECTIVE: The objective of this study was to compare environmental barriers, housing accessibility, and usability before and after relocation of very old, single-living people in the community. It also examined whether accessibility improved after relocation compared with a simulated scenario in which participants would have remained in their former dwellings. METHOD: Data from the Swedish part of the longitudinal Enabling Autonomy, Participation, and Well-Being in Old Age: The Home Environment as a Determinant for Healthy Ageing database were analyzed with a before-and-after design (N = 29). Mean time from before to after data collection was 2.6 yr. RESULTS: The number of environmental barriers was significantly reduced after relocation, especially barriers at entrances and in bathrooms. In addition, usability was stable and accessibility improved compared with the simulated scenario of remaining in the former dwelling. CONCLUSION: Community-based moves to new dwellings may lead to fewer environmental barriers and stable levels of usability and accessibility. This relocation is a positive outcome, considering the expected functional decline in old age.

Experiences of mobility device use over time: A multiple case study among very old Latvian women.

AIM: To explore the experiences over time of using mobility devices (MDs) among very old women in the context of everyday life in Latvia. METHODS: This study utilized a multiple case-study design that employed an explanatory mixed-methods approach. A combination of quantitative survey data on home and health and qualitative interview data for each participant were used to create three narratives to describe the experiences of MD use in everyday life over time, followed by a cross-case analysis. RESULTS: The three cases illustrate that very old women accept and use MDs due to walking difficulties and related needs. Over time, functional decline combined with physical environmental barriers and changes in their social networks limited the supportive role that available MDs could offer these women. CONCLUSIONS: The findings contribute to the understanding of the complexity of MD use in everyday life among very old women in Latvia and the need for different kinds of MDs. These findings illustrate the importance of considering the interaction between people's everyday life situation and their physical environment for their optimal use of MDs. This is important information for policy-makers who can optimize the services for old people in Latvia and support the need for occupational therapists' professional competence for the planning and development of MD provision.

Use, non-use and perceived unmet needs of assistive technology among Swedish people in the third age.

PURPOSE: To describe the most prominent use of or perceived unmet need of assistive technology (AT) and to compare the characteristics of users, non-users and those expressing perceived unmet need with respect to overall health, independence in everyday life, environmental barriers and socio-demographic features. METHOD: The study is based on data collected in the "Home and Health in the Third Age Project". In all, 371 individuals participated and data were collected during home visits in southern Sweden by interviewers trained specifically for this project. The data collection comprised well-proven self-report scales and observational formats on the home environment and health indicators as well as questions about basic demographics and socio-structural data. RESULTS: The proportion of users constituted almost half of the total sample. The most common types of AT used were for furnishing/adaptation (35%) and the highest perceived unmet need concerned AT for communication, in total 8%. Those cohabiting were to a higher extent users of AT for furnishing/adaptation, compared to those who lived alone. A higher perceived unmet need was seen among those who lived alone compared with cohabiting people. CONCLUSIONS: These findings are of importance for future planning and development of policy to improve health services for the new generation of elderly. Implications for Rehabilitation In order to support the ageing process, the need for assistive technology has to be monitored in the third age. Assistive technology for furnishings and adaptation are frequently used by individuals in their third age and are important to support ageing in the home. Not only do health aspects impact the use of assistive technology, but gender, living conditions and social situation also matter - older men especially need to be monitored thoroughly according to their perceived unmet needs as well as do older persons living alone.

A European perspective on the service delivery systems for assistive technology--differences and similarities between Latvia and Sweden.

National laws and regulations on service delivery systems (SDS) for assistive technology (AT) in Europe aim to support the activity and participation of people with disabilities. The aim of this paper was to study similarities and differences in the SDS for AT of one Eastern and one Western EU member state. The legislation and regulations, and their operationalization were described from the perspective of key actors, with a focus on the ageing population. Semi-structured interviews (N = 14) were conducted in Sweden and Latvia. The informants had various professional backgrounds and organizational roles, and represented different areas of work. Similarities found were connected to legislation and policy, the aim of AT provision, the growth of a private sector and how financial resources affect the SDS. Differences were related to the availability of AT, and to how, and for and by whom the devices were provided, with Latvia prioritizing certain groups over others and excluding older people. In Latvia, despite it not being stated in the legislation, a medical perspective on AT provision was applied, whereas in Sweden, in congruence with the legislation, the perspective was explicitly biopsychosocial. Despite similarities on the legislation and policy level, interpreted based on the perceptions of professionals there are marked differences between Latvia and Sweden in the operationalization of the SDS of AT. To support activity and participation for the ageing population, the services connected to AT need to be carefully thought out and executed, making efficient use of financial resources and professional competencies.

Residential normalcy and environmental experiences of very old people: changes in residential reasoning over time.

The decision to relocate in old age is intricately linked to thoughts and desires to stay put. However, most research focuses either on strategies that allow people to age in place or on their reasons for relocation. There is a need for more knowledge on very old peoples' residential reasoning, including thoughts about aging in place and thoughts about relocation as one intertwined process evolving in everyday life. The aim of this study was to explore what we refer to as the process of residential reasoning and how it changes over time among very old people, and to contribute to the theoretical development regarding aging in place and relocation. Taking a longitudinal perspective, data stem from the ENABLE-AGE In-depth Study, with interviews conducted in 2003 followed up in interviews in 2011. The 16 participants of the present study were 80-89years at the time of the first interview. During analysis the Theoretical Model of Residential Normalcy by Golant and the Life Course Model of Environmental Experience by Rowles & Watkins were used as sensitizing concepts. The findings revealed changes in the process of residential reasoning that related to a wide variety of issues. Such issues included the way very old people use their environmental experience, their striving to build upon or dismiss attachment to place, and their attempts to maintain or regain residential normalcy during years of declining health and loss of independence. In addition, the changes in reasoning were related to end-of-life issues. The findings contribute to the theoretical discussion on aging in place, relocation as a coping strategy, and reattachment after moving in very old age.

Relocation to ordinary or special housing in very old age: aspects of housing and health.

Relocation in very old age is considered to be a major life event and a move could be triggered by many different economic, social, health-related, or environmental reasons. Based on the notion of person-environment (P-E) fit as expressed in the Ecological Theory of Ageing, the aim of this prospective study over 4 years was to explore which aspects of housing and health predict relocation to ordinary or special housing among very old people. At baseline, the participants (80-89 years old) lived alone in ordinary housing in Sweden (N = 384). Data collection at home visits included assessments and observations on aspects of objective and perceived housing as well as on aspects of health. After 4 years, 18 % (n = 70) of the participants had moved, either to ordinary housing (n = 24) or to special housing (n = 46). Cox regression models showed dependence in cleaning, perceived functional independence, and living in a one-family house to predict moves to ordinary housing. Dependence in cooking, cognitive deficits, and accessibility problems predicted moves to special housing. In conclusion, aspects of housing and health are related to relocation in very old age, but in different patterns for relocation to ordinary housing and special housing, respectively. This kind of knowledge has practical implications for relocation counselling and societal planning targeting very old people.

Three very old men's experiences of mobility device use over time.

AIM: The aim of this study was to explore experiences of mobility device (MD) use among very old single-living Swedish men. METHODS: A multiple case study of three men, involving quantitative and qualitative data, was used in an embedded mixed methods design and presented in three narrative stories. To capture differences and similarities in the use of MDs a cross-case analysis was conducted. RESULTS: The findings show that the devices were important for retaining independence in everyday life and for participation in social activities. Use of MDs impacted on everyday activities by enabling, restricting, or changing the performance. Planning and careful thinking were new strategies developed for managing everyday life. The devices were purchased, received from relatives, or prescribed by professionals at a time point when there was a need. The function and form of the devices and a supportive environment were considered important for optimal use. CONCLUSIONS: These narrative stories nurture our understanding of complex and multifaceted aspects impacting on MD use in everyday life for very old men. To support active ageing, occupational therapists and other health professionals need to seek information on personal needs and expectations, in order to understand individual perspectives on MD use.

Voices on relocation and aging in place in very old age--a complex and ambivalent matter.

PURPOSE: This cross-national qualitative study explores how very old people reflect upon relocation and aging in place. DESIGN AND METHODS: Swedish and German data are utilized in this study. About 80 community-living participants, 80-89 years of age, were interviewed with open-ended questions at home by trained interviewers. The interviews were analyzed by using conventional qualitative content analyses. RESULTS: Reasoning about relocation or aging in place in very old age is a complex and ambivalent matter. A variety of reflections, emotions, and behaviors for and against a move are revealed. Reasons to move reflect the urge to maintain independence, to stay in control, and to avoid loneliness. This is mainly expressed reactively. Reasons not to move reflect a strong attachment to the home and neighborhood. Moreover, reasons not to move reflect practical aspect such as economy and strain, as well as fear of losing continuity of habits and routines. IMPLICATIONS: There is a need for society to develop counseling systems to meet very old people's ambivalence and practical considerations to move or not to move. Thus, the ambivalence to stay put or to relocate needs to be further explored from an applied perspective by also taking nonmovers into account.

The use of assistive devices and change in use during the ageing process among very old Swedish people.

PURPOSE: To investigate the characteristics and change in use among very old Swedish users and non-users of assistive devices (ADs) for mobility and personal care, over a six-year period, and to investigate factors predicting AD use over a six-year period. METHOD: Descriptive statistics and logistic regression were used to analyse quantitative data from a subsample from the Swedish part of the ENABLE-AGE Survey Study, n = 154. Variables according to socio-demographics, environment and health were utilized. RESULTS: The number of users increased over time, particularly those using both types of ADs (mobility and personal care). There were differences in health between users and non-users, while no such differences were seen regarding socio-demographics or environmental factors. Health factors most prominent predicted AD use after six years, but also variables within socio-demographics and the environment had an impact on the use; income for ADs for personal care and aspects in the outdoor environment for ADs for mobility. CONCLUSIONS: As ADs increases over time, it is important, to pay attention to health as well as other factors, among users and non-users of ADs, to provide important information in planning for and supporting healthy and active ageing. [Box: see text].

Clients' experiences of housing adaptations: a longitudinal mixed-methods study.

PURPOSE: To explore clients' experience of the housing adaptations (HAs) over time in relation to housing and health. METHOD: A multiple longitudinal case study, employing an embedded mixed-method design was used. Four participants were included and data from semi-structured interviews were combined with data from structured survey assessments. RESULTS: HA made it possible to maintain valuable roles and activities, to continue to live in the participants' own homes and to take part in the society. The participants strived for autonomy and control, and in order to do so they needed different kinds of support, in terms of HA and mobility devices as well as support from professionals. HA also challenged the participants' routines and habits, as well as their perception about how an appealing HA aesthetically. Thus, the decision to apply for a HA was not always straightforward. Instead, the participants were constantly engaged in negotiations with themselves, concerning benefits and drawbacks of different decisions. CONCLUSIONS: HAs involve complex person-environment-activity (P-E-A) transactions, and enhance clients' activity and independence in spite of functional decline. The knowledge generated is important in order to improve individual HA, as well as improving the efficiency and effectiveness of the intervention.

First Steps towards Evidence-Based Preventive Home Visits: Experiences Gathered in a Swedish Municipality.

The purpose of preventive home visits is to promote overall health and wellbeing in old age. The aim of this paper was to describe the process of the development of evidence-based preventive home visits, targeting independent community-living older persons. The evidence base was generated from published studies and practical experiences. The results demonstrate that preventive home visits should be directed to persons 80 years old and older and involve various professional competences. The visits should be personalized, lead to concrete interventions, and be followed up. The health areas assessed should derive from a broad perspective and include social, psychological, and medical aspects. Core components in the protocol developed in this study captured physical, medical, psychosocial, and environmental aspects. Results of a pilot study showed that the protocol validly identified health risks among older people with different levels of ADL dependence.

Very old Swedish women's experiences of mobility devices in everyday occupation: a longitudinal case study.

The use of mobility devices, such as walking sticks and rollators, increases during the ageing process. Our aim was to explore how very old single-living Swedish women experience the use of mobility devices over time, in relation to everyday occupation. A multiple case study strategy involving quantitative and qualitative data was used. The findings indicate that the use of mobility devices, rollators in particular, starts off as support for walking but over time becomes more involved in occupational performance, resulting in complex transactions between personal, environmental, and task components. Personal factors such as ability to adjust and adapt to different situations seem to be crucial for optimal mobility device use. Strategies and adaptive behavior were developed over the years while striving for maintained independence and participation. The use of mobility devices was described as something one has to accept, but also a constant reminder of your limitations, or as a possibility to remain active and to manage everyday occupation. The findings stress the need to adopt a comprehensive view when trying to facilitate everyday occupations in very old age. Physical, social, psychological aspects, combinations among assistive devices, and home modification all need to be reflected on and monitored over time.

Towards an instrument targeting mobility-related participation: Nordic cross-national reliability.

OBJECTIVE: To investigate test-retest reliability and internal consistency of a new instrument for evaluation of mobility device interventions. MATERIAL AND METHODS: The instrument comprised 4 scales and one summed index. Two test-retest interviews involved 147 mobility device users (mean age 60 years) with a broad range of functional limitations, living at home. RESULTS: For 2 scales and the summed index the reliability was substantial or almost perfect (kappa 0.71/ kappaW 0.76/intraclass correlation coefficient = 0.93; confidence interval = 0.90-0.95). The reliability of one scale was moderate (kappaW 0.41), but after reduction of grades and combination with another scale, it was substantial (kappaW 0.66). The reliability of the fourth scale was moderate (kappaW 0.55). The internal consistency of 3 scales varied from alpha 0.63 to 0.76. CONCLUSION: Even though the test-retest reliability of all but one of the scales of the new instrument was substantial to almost perfect, this study demonstrated that revision is required. The challenges identified were probably due to the highly complex relationship between outdoor participation while using mobility devices and accessibility to the outdoor physical environment. Thus, based on the results of this study the instrument will be revised and subsequently launched as the "Nordic mobility-related participation outcome evaluation of assistive device intervention" (NOMO instrument). More research on the concept of mobility-related participation and the psychometric qualities of the instrument is required.