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How women caregivers deal with their own long-term illness: A qualitative study
Abstract
To explore the strategies used by women caregivers to deal with their own chronic health conditions.
Providing care has a negative impact on the physical and mental health of caregivers. When caregivers suffer chronic health problems, it increases the burden of caring, making them more vulnerable and less likely to look after their own health.
Qualitative study carried out between April 2010-December 2011.
Thirty-nine women with long-term illness who care for dependent family members took part in the study, 23 in semi-structured interviews and 16 in two focus groups. The data were analysed using the grounded theory method.
Women caregivers feel that they cannot let their own chronic health problems prevent them from caring for others. Dealing with their health problems enables them to provide the time and effort their family member requires. They do this by: (1) normalizing their chronic conditions; (2) neutralizing the effects of their long-term illness; and (3) forgetting that they are chronic sufferers.
This study analyses the strategies that family caregivers use to deal with their own chronic health problems, so that they can continue to provide family care. It shows that, to forget about their own illnesses, these women must take charge of them. Nurses need to recognize and value the strategies that caregivers use to deal with their own health problems. They also need to encourage them to use the most effective strategies, to improve their quality of life.
... In Europe, chronic diseases cause 86% of deaths and affect 40% of the population over the age of 15 (Busse et al., 2010). Also, 88% of the care for dependent individuals is provided via an informal system of care, from a close relative, with no specific training for the care they provide, no financial remuneration and requiring high levels of dedication, 24 h a day, 365 days a year (Martínez-Marcos and De la Cuesta-Benjumea, 2014). ...
After the end of their time as a caregiver, former caregivers have needs and feelings that have been subject to little study to date. The aim of the study is to determine and analyse the feelings, perceptions and practices of former caregivers in the reconstruction of their daily lives. This is a qualitative study based on the Grounded Theory developed by Charmaz. The study involved 14 former caregivers who had cared for their relative for more than 2 years and who had stopped caring for them more than 2 years previously. Fourteen in-depth interviews were conducted and data were collected over 13 months between 2015 and 2017. Data were analysed using the Grounded Theory Method. In addition, this study was approved by the ethics committee of the Institut Universitari d’Investigació en Atenció Primària Jordi Gol. The former caregiver experiences a transition, which begins in the days before the death of their relative and may continue for more than 3 years. Three critical moments in the post-caring transition were found: (1) the post-caring emptiness; (2) the end of the period as a caregiver; and (3) the movement towards a new life. Family and professional support is needed during this transition. Former caregivers experience a transition in the rebuilding of their daily lives; furthermore, former caregivers may be a source of support for other caregivers, which is linked to positive mental health factors. Healthcare organisations need to acknowledge the emotional, psychosocial and psychological health of former caregivers.
... Así, variables demográficas como el sexo, la relación de parentesco o el nivel educativo han aparecido como significativas en estudios cuantitativos como los de Adelman et al. (2014) o Manso et al. (2013). Investigaciones de índole cualitativa han encontrado también diferencias en el impacto de la carga y la capacidad de afrontamiento entre hombres y mujeres, así como cambios en la respuesta adaptativa según la etapa del cuidado (Daley et al., 2017;Martínez-Marcos y De la Cuesta-Benjumea, 2013;Moreno-Cámara et al., 2016;Rubio et al., 2017) Sin embargo, estudios como los de McConaghy y Caltabiano (2005) o Raggi et al. (2015) no han reflejado relaciones de influencia en el caso de variables como el género o el nivel educativo. La influencia de variables clínicas, como el deterioro funcional o el número de horas dedicadas al cuidado, tampoco se ha mostrado consistente en la literatura (véanse al respecto los resultados de los citados estudios de Manso et al., 2013o Raggi et al., 2015. ...
El cuidado de una persona con alzhéimer ha sido identificado como una tarea altamente estresante para las cuidadoras informales. Las estrategias de afrontamiento permiten modular el impacto emocional que esta tarea provoca. El objetivo de este trabajo es describir las estrategias de afrontamiento más utilizadas por las cuidadoras informales de personas con alzhéimer e identificar si se presentan diferencias en la utilización de estas en función de variables personales y/o situacionales. Han participado 57 cuidadoras informales de personas con alzhéimer de una asociación rural de Castilla y León (España). La distinta utilización de las estrategias está relacionada de forma diferente con las variables estudiadas. No se aprecia un patrón de respuesta uniforme. El estudio confirma la idea de la flexibilidad del afrontamiento. Los resultados revelan la necesidad de formar en el manejo flexible y adaptativo de estas estrategias en función de los rasgos personales y las demandas específicas de la situación.
... In our study, caregivers express their discomfort because of the lack of recognition of their work and the involvement of other family members in care, but do not express the need to acquire negotiation skills with the family to legitimize their role and get help. The family environment underestimates the work of the caregiver, possibly by normalizing their role, especially if they are women [46,47]. This issue goes unnoticed in studies conducted in other cultural contexts [26]. ...
The purpose of this study was to identify, classify and analyze the perceived needs of caregivers of elderly people with dementia during the care process. A descriptive phenomenological qualitative study using seven focus groups was conducted in different primary health care centers in the province of Jaén (Spain) between July 2012 and February 2013. Eighty-two family caregivers who were caring for people with dementia in different stages of the disease were selected by purposeful maximum variation sampling. Data were analyzed and organized thematically, considering the semantic and pragmatic content and field notes. Two main categories of the perceived needs of caregivers were identified. The first was related to the management of caring for a relative with dementia, and the second was related to the management of the caregivers' own care. Our findings support the provision of comprehensive interventions for the improvement of caregivers' emotional health that encompass more than one care need. This is where psycho-educational interventions aimed at managing the various aspects of dementia and self-care in caregivers can be accommodated. In addition, proactive interventions to develop important skills to care for a relative with dementia, which are not perceived as needs by the caregivers, are needed. These include skills in family negotiation, planning and searching for resources outside the family.
... Review paper (n = 9) Amer, 1999;Anderson, Riesch, Pridham, Lutz, & Becker, 2010;Canam, 1993;Carter, Urey, & Eid, 1992;Coyne, 1997;Kelly, 1998;Kendall, 1997;MacAllister, Boyd, Holland, Milazzo, & Krupp, 2007;Scott & Scott, 1999 Position paper (n = 4) Anderson et al., 1989;Joachim & Acorn, 2000;Ridley, 1989;Tsimicalis, McKeever, Kavanagh, & Stevens, 2006 Research report, background section (n = 10) Delmar et al., 2005Delmar et al., , 2006Gabor & Farnham, 1996;Koch, Marks, & Tooke, 2001;Lee & Rempel, 2011;McCarthy & Gallo, 1992;Pattison, Moledina, & Barrett, 2006;Phillips, 1990;Sawyer, 1992;Shore, Austin, & Dunn, 2004;Williams, Corlett, Dowell, Coyle, & Mukhopadhyay, 2009 Research report, discussion section (n = 31) Ayres, 2000;Bossert, Holaday, Harkins, & Turner-Henson, 1990;Britton & Moore, 2002;Carlsson-Lalloo, Rusner, Mellgren, & Berg, 2016;Cowles & Rodgers, 1997;Faux, 1991;Finfgeld, 1995;Gantt, 2002;Gerace, Camilleri, & Ayres, 1993;Gravelle, 1997;Keim-Malpass, Stegenga, Loudin, Kennedy, & Kools, 2015;Kelly & Ganong, 2011;Kendall, 1998;Lowes, Lyne, & Gregory, 2004;Martinez-Marcos & De la Cuesta-Benjumea, 2014;McNamara, Dickinson, & Byrnes, 2009;Peck & Lillibridge, 2005;Radford, Thorne, & Bassingthwaighte, 1997;Rashid et al., 2016;Ray, 2002;Rechner, 1990;Rempel, Harrison, & Williamson, 2009;Rose, Mallinson, & Walton-Moss, 2002;Shandor Miles & Holditch-Davis, 1995;Shragge, Wismer, Olson, & Baracos, 2007;Spencer, Cooper, & Milton, 2014;Stewart, 2003;Thon & Ullrich, 2009;Watson, Kieckhefer, & Olshansky, 2006;Winkelman & Shapiro, 1994;Wuest & Stern, 1990 Research report, background and discussion sections (n = 7) Cronin, 2004;Gjengedal, Rustoen, Wahl, & Hanestad, 2003;Gulick, 2003;Rehm & Franck, 2000;Rehm & Rohr, 2002;Sanderson, Calnan, & Kumar, 2015;Tishelman & Sachs, 1998 Research report, concept development (N = 8) Lee & Rempel, 2011;Lindsay, 2014;Morse, Wilson, & Penrod, 2000;Rehm & Bradley, 2005;Rehm & Catanzaro, 1998;Robinson, 1993;Sanderson, Calnan, Morris, Richards, & Hewlett, 2011;Stubblefield & Murray, 1998Other (n = 6) Cooley, 1998Lynn-McHale & Deatrick, 2000;Rodgers, 1989Rodgers, , 1991Wade, 1999;Zeitzer, 2008 reports citing the analysis in both the background and discussion sections of the report, no conclusions were drawn about the implications of the results in terms of the need for further refinement of the concept. In contrast, eight reports reflected deliberate efforts to develop and refine the concept, with the authors addressing how their research both built on and extended the concept. ...
Purpose:
Despite an overwhelming increase in the number of concept analyses published since the early 1970s, there are significant limitations to the impact of this work in promoting progress in nursing science.
Design:
We conducted an extensive review of concept analyses published between 1972 and 2017 to identify patterns in analysis and followed this with exploration of an exemplar related to the concept of normalization to demonstrate the capabilities of analysis for promoting concept development and progress.
Methods:
Scoping review of peer-reviewed literature published in the Cumulative Index to Nursing and Allied Health Literature (CINAHL) in which the terms "concept analysis," "concept clarification," and "concept derivation" appeared in any part of the reference. The original search returned 3,489 articles. This initial pool was refined to a final sample of 958 articles published in 223 journals and addressing 604 concepts. A review of citations of the original analysis of the concept of normalization resulted in 75 articles selected for closer examination of the process of concept development.
Findings:
Review showed a clear pattern of repetition of analysis of the same concept, growth in number of published analyses, preponderance of first authors with master's degrees, and 43 distinct descriptions of methods. Review of the 75 citations to the normalization analysis identified multiple ways concept analysis can inform subsequent research and theory development.
Conclusions:
Conceptual work needs to move beyond the level of "concept analysis" involving clear linkage to the resolution of problems in the discipline. Conceptual work is an important component of progress in the knowledge base of a discipline, and more effective use of concept development activities are needed to maximize the potential of this important work. It is important to the discipline that we facilitate progress in nursing science on a theoretical and conceptual level as a part of cohesive and systematic development of the discipline.
Clinical relevance:
The absence of effective concepts impedes the ability to recognize, discuss, define, and conduct studies important to clinical practice and research. This article reflects the pressing need as well as the potential for concept analysis work to be approached in a way that promotes nursing science and enables conceptually sound research to improve clinical care.
... Este estudio sigue una metodología cualitativa de estudio de casos, con una recogida de datos a través de entrevistas semiestructuradas. La investigación se ha diseñado de acuerdo con los principios de la teoría fundamentada 22 (grounded theory), que lleva a cabo de forma simultánea la recogida y análisis de los datos con el objetivo de descubrir, a través de la inducción, una teoría explicativa del fenómeno estudiado mediante 2 estrategias metodológicas 23,24 : el muestreo teórico y el método comparativo. ...
Objective:
To analyse the utility perceived by managers of centers of primary care about management tools (budget and balanced scorecard), together their impact on human resources motivation.
Design:
Qualitative study (case study) based on grounded theory performed between January and June 2014.
Location:
Units of Clinical Management of Primary Health (UGCAP) in Metropolitan Health Area of Seville, Spain.
Participants:
UGCAP managers and Health Area (CEO) managers.
Method:
Data were collected through 8 semi-structured interviews using non-probabilistic intentional sampling with representation and sufficiency criteria of discourse. Interviews were recorded, literally transcripted and analysis through in-vivo codes.
Results:
Both tools are fully implemented but differently used in primary care centers. Budget is perceived as a coercive management tool, which has been imposed for cost saving; however, it is scarcely adequate for day-by-day management. While balanced scorecard is a more flexible tool that allows identifying financial and welfare problems, budgeting limits heavily reduce the possibility of implementing adequate solutions. The policy of incentives is not adequate either, leading on de-motivation.
Conclusions:
This study shows that budgeting restrictions have led to a significant reduction in autonomy of Spanish Primary Care centers. Management decision making is much centralised, also focused on cost saving over quality of healthcare. As a result, two needs emerge for the future: increasing centers' autonomy and improving staff commitment through training and professional development programs.
... Estudio cualitativo de teoría fundamentada constructivista 24 , descrito en otra publicación 25 . Participaron 39 mujeres cuidadoras de familiares dependientes que padecían procesos crónicos de salud desde hacía más de un año. ...
Objetivo: Describir la experiencia del cuidado de las mujeres cuidadoras con procesos crónicos de salud que cuidan de un familiar dependiente.
Diseño: Estudio cualitativo de teoría fundamentada constructivista.
Emplazamiento: Estudio realizado en dos áreas de salud urbanas de la Comunidad de Madrid.
Participantes: Treinta y nueve mujeres con enfermedad crónica que cuidan a familiares dependientes se seleccionaron por medio del muestreo con propósito.
Método: Los datos se recolectaron por medio de 23 entrevistas semiestructuradas y 2 grupos focales entre abril de 2010 y diciembre de 2011. En el análisis de datos se utilizaron los procedimientos de la teoría fundamentada.
Resultados: Sentir la vida mermada describe la experiencia subjetiva de las cuidadoras familiares con procesos crónicos de salud que cuidan a un familiar dependiente. Al contrastar su vida pasada con su vida actual se hacen conscientes de las pérdidas que han ido sufriendo a lo largo del tiempo. Se sienten menos fuertes, más tristes y menos libres, les preocupa cómo hacer frente a las demandas del cuidado familiar. La vida que ahora llevan les hace cuestionarse el sentido de sus propias vidas.
Conclusiones: Este estudio muestra las pérdidas que constatan las mujeres cuidadoras con procesos crónicos de salud en su día a día que les lleva a perder el sentido de su propia vida. Conocer la experiencia de estas cuidadoras ayudará a los equipos de atención primaria a desarrollar intervenciones específicas de acuerdo con las necesidades específicas de las cuidadoras y proporcionar recursos que compensen las pérdidas que sienten y mejoren su calidad de vida.
Rationale
Child maltreatment and problematic parenting are related to negative outcomes for children. Poor parental health could be a risk factor for problematic parenting through several mechanisms: 1) inadequate emotional regulation and coping; 2) impairment of parental capacity; and, 3) impairment of the parent-child relationship.
Objective
This study examines relationships between self-rated parental health, prescription drug use, and a broad array of negative parenting outcomes.
Methods
A sample of general population parents of children aged ten and younger was recruited from 30 mid-sized cities in California (n=681). Weighted mixed-effects negative binomial and logistic regression models were used to examine associations between poor parental health, prescription drug use and child maltreatment (physical abuse, supervisory neglect, and physical neglect), and problematic parenting (psychological aggression and corporal punishment).
Results
Parents in poor health used physical abuse, corporal punishment, and psychological aggression more frequently and had higher odds of supervisory neglect. Parents who were taking more prescription medications had higher odds of physical neglect. Exploratory analyses suggested that prescriptions for certain medical conditions both increased and decreased the risk of problematic parenting.
Conclusions
Poor health and prescription drug use are not uncommon and present largely under-recognized risk factors for a spectrum of adverse parenting outcomes. Our study provides additional evidence that parents in poor health are at heightened risk of negative parenting, and need targeted intervention supports to support family well-being.
Psychology's study of women has revealed some themes that span cultures and countries, yet women's lived experiences in different cultures can be dramatically different. This Element explores, from a psychological perspective, women's issues in cultural contexts. Beginning with the question of public and private identity (i.e., who 'counts' as a woman), it goes on to examine embodiment, sexuality, reproduction, family roles, economic participation and power, violence, leadership, and feminist activism. It concludes with a brief discussion of women's complicated relationship to culture: as both keepers and sometimes prisoners of cultural traditions - particularly in the context of migration to different cultures. Running through the Element are two general themes: the pervasiveness of a gender hierarchy that often privileges men over women, and the ways in which women's lived experience varies within cultures according to the intersection of gender with other categories that affect expectations, norms, power and privilege.
The paper proposes a theoretical model of long-term care (LTC) issues in the context of elderly spouses and studies public LTC policy optimal in that case. In particular, it focuses on myopia about the negative health effects of caregiving burden and, relatedly, on the interaction between this burden and the two spouses’ insurance coverage. Myopia results in an inefficiently high caregiving effort of the woman, who is the caregiver in the model. While under full information a linear caregiving tax can implement the first-best, unobservability of the woman’s caregiving might require the use of LTC insurance subsidies. Interestingly, myopia about negative caregiving effects implies a subsidy on the man’s but a tax on the woman’s insurance premium. Paradoxically, insurance against the woman’s LTC risk may be at odds with the protection of her health, which questions the popular tendency to emphasize more the importance of LTC insurance for women than for men.
Uncover how women self-manage their own chronic illness while taking care of a dependent relative.
International policies place special emphasis in promoting interventions addressed to control, prevent and care for people with chronic health conditions. Self-management is a crucial part of this care. Caregivers are more prone to have chronic illness than non-caregivers. They are confronted with dilemmas about taking care of themselves while taking care of their dependent relative and the rest of their families. Caregivers articulate strategies to enable them to focus their energy on caring.
Qualitative study using constructivist grounded theory.
Thirty-nine women caregivers with a chronic illness participated in the study. Twenty-three semi-structured interviews and two focus groups were carried out between April 2010-December 2011. Data were analysed using grounded theory procedures.
Self-management helps women caregivers with a chronic illness to balance the demands of their own illness and those of the dependent relative. They self-manage their illness by self-regulating the treatment, by regulating their strength and by controlling their emotions.
Women caregivers integrate effectively and creatively the management of their chronic illnesses within the complexities of family care. This renders their health needs invisible and reaffirms them as capable caregivers.
Identifying self-management strategies of women caregivers allow health professionals to acknowledge and reinforce effective self-care measures and to deter those that are ineffective and lessen their quality of life.
© 2014 John Wiley & Sons Ltd.
Using an intergenerational sample of 460 young adults and their middle-aged parents, the study examined adults' views of parental obligation and caregiving. Both generations of women generally reported higher levels of felt obligation to their parents than did both generations of men. Regardless of gender, adults with one living parent generally reported feeling more obligation to provide assistance than did adults with two living parents. Overall, young adult children expressed higher levels of felt obligation to their parents than did middle-aged parents to their parents. Felt obligation accounted for a significant amount of additional variance in young and middle-aged adults' reports of parental caregiving beyond that of gender, self-reports of parental affection, and filial responsibility.
She has some experience to work and research with people with chronic illness especially diabetes. The second and the third authors, Prof Higgins and Prof Koch, are Ms Adili's supervisors. They are professors of Nursing at the University of Newcastle. Prof Higgins is experienced in older people's research and Prof Koch is experienced in the participatory action research. ABSTRACT Whilst there are many chronic conditions such as; asthma, cancer, multiple sclerosis, cardiovascular diseases, arthritis, chronic obstructive pulmonary disease, mental ill health to name a few, this study focused on researching with people living with, type 2 diabetes. Although type 2diabetes has been well researched over the years, particularly from a medical focus, there were, to date, few studies that explored what happens when a person was first diagnosed. It had been observed that when people were diagnosed with diabetes they must dramatically modify their everyday lives, but the way in which these changes take place had not been studied. More importantly, what could be learnt researching with people as they took the results of a chronic condition into their lives had not been studied. The aim of this study was to explore how older women learnt to live with diabetes during the first year post diagnosis.
This report investigates regulations for the provision of informal care in 21 member states of the European Union. We focus on the comparison of public support for informal care, and compare in detail the monetary benefits that can be used to finance informal care. Additionally, we use SHARE data to compare characteristics of informal carers in a subset of countries, looking at how much care and what kind of care is being provided, and the relationship between the carer and the care recipient. Finally, we contrast characteristics of informal care provision with existing typologies of long-term care systems. Our review shows that almost all the countries studied offer some kind of cash benefit that can be regarded as a support to finance long-term care provided by informal carers. More than half of all countries studied provide a payment directed to the recipient of care, and slightly more countries offer payments directed to informal carers. We find an overlap of ten countries where both informal carers and recipients of care can be eligible for some kind of payment. There is, however, broad variation regarding the amount of support provided: very few countries provide benefits that can be seen as a substitute for other paid employment, and some countries provide rather low payments that are more symbolic in value. ENEPRI Research Reports present the findings and conclusions of research undertaken in the context of research projects carried out by a consortium of ENEPRI member institutes. This report is a contribution to Work Package 3 of the ANCIEN project, which focuses on the future of long-term care for the elderly in Europe, funded by the European Commission under the 7 th Framework Programme (FP 7 Health-2007-3.2.2, Grant no. 223483).). See back page for more information. The views expressed are attributable only to the authors in a personal capacity and not to any institution with which they are associated.
To examine the relationships of social support and coping strategies to health-related quality of life among primary caregivers of stroke survivors in China.
Caring for a stroke survivor is highly stressful, which can negatively affect a caregiver's physical and psychological well-being. Stroke caregivers generally report more somatic symptoms, depressive symptoms, sleep disorders and social isolation. They generally have poorer quality of life than the general population.
A cross-sectional, descriptive, correlational study.
A quasi-random, point of reference sample of 121 survivor-caregiver dyads was recruited from three community health centres and six health service stations in a city in central China. Data were collected in face-to-face interviews at participants' homes using structured questionnaires.
Higher educational levels, planning and active coping were positively associated with health-related quality of life. The number of chronic conditions, hours of care per day and functional dependence of the survivor were negatively related to quality of life.
Active coping strategies predicted better health-related quality of life. Findings suggest that intervention programmes should be developed to enhance caregivers of stroke survivors' coping skills and improve social support for these caregivers in China.
Community healthcare providers may need to help caregivers strengthen strategies that are effective (planning, active coping, seeking instrumental and emotional support) and change those that are not helpful (venting, denial and self-blame).
This article reports an ethnographic study of drag queens who perform in Miami Beach. Drag queens are marginalized, both economically and socially. However, drag enables some gay men to emphasize and manipulate aspects of femininity for the means of earning attention and income and garnering situational power. Grounding their empirical findings in symbolic interaction, identity, and performance theories, the authors argue that drag queens employ nuanced strategies to negotiate their contradictory status of admired yet alienated performers. The authors use observational and in-depth interview data to explore how participants experience, cope with, and challenge their social marginality. The authors then detail the rewards of drag, focusing on the allure of the transformation, situational power, and income. A subjective understanding of drag reveals that although marginalization is a serious issue, the rewards of drag can be empowering. The authors argue that identity work emerges as a link between marginalization and rewards.
consider some of the situations for which focus groups may be a particularly desirable [social science] research method (PsycINFO Database Record (c) 2012 APA, all rights reserved)
This paper examines whether participation in social activities is associated with higher levels of wellbeing among post-retirement age people in England, and, if so, whether these relationships are explained by the reciprocal nature of these activities. Cross-sectional analysis of relationships between social activities (including paid work, caring and volunteering) and wellbeing (quality of life, life satisfaction and depression) was conducted among participants of one wave of the English Longitudinal Study of Ageing (ELSA) who were of state pension age or older. Participants in paid or voluntary work generally had more favourable wellbeing than those who did not participate in these activities. Caring was not associated with wellbeing, although female carers were less likely to be depressed than non-carers. Carers, volunteers and those in paid work who felt adequately rewarded for their activities had better wellbeing than those who were not participating in those activities, while those who did not feel rewarded did not differ from non-participants. These results point to the need to increase the rewards that older people receive from their productive activities, particularly in relation to caring work.
To compare the self-assessed health status (SAHS) of female caregivers of older adults across the United States (N = 1,496), China (N = 485), and the United Kingdom (N = 252), data from three data sets were analyzed to isolate significant predictors of SAHS using an adapted meta-analytic technique. Higher income and full-time employment were predictors of higher SAHS; chronic health condition and emotional strain predicted lower SAHS. Female gender was a predictor of lower SAHS. The health status of women was negatively impacted by the caregiving experience. National policies, such as those in the United Kingdom, may result in higher SAHS for women caregivers.
Purpose:
Informal care provided by family and friends of patients with chronic illness, such as cancer, makes an invaluable contribution to the medical system and to society, yet it also imposes challenges that result in increased morbidity and mortality of the caregivers. Researchers studying this topic confront major difficulties in acquiring information about caregivers' morbidity from medical records, a procedure that is costly and time consuming.
Methods:
As an alternative, we developed a brief self-administered measure of morbid conditions for informal caregivers of persons with medical illness. We tested the measure, named the Morbidities Index for Caregivers of Chronic Illnesses (MICCI), using a large cancer caregiver sample (N = 774).
Results:
The validity of the MICCI was supported by evidence that self-reports of the majority of morbidities were related to well-known demographic correlates of such morbidities, such as older age and being male, and that overall scores are related to widely used indicators of health status of medical populations as measured by the MOS SF. Caregivers reported an average of 4.5 morbid conditions. A higher number of morbidities were predicted by caregivers' poorer physical and mental health scores on the MOS.
Conclusions:
MICCI has the advantage of providing both an overall index of morbidities and information about specific diagnostic categories that are of potential interest to researchers.
Abstract The paper is based on semi-structured interviews with a series of rheumatoid arthritis patients. Chronic illness is conceptualised as a particular type of disruptive event. This disruption highlights the resources (cognitive and material) available to individuals, modes of explanation for pain and suffering, continuities and discontinuities between professional and lay thought, and sources of variation in experience.
Cardiovascular disease is the largest killer of women internationally and women often suffer inferior outcomes following an acute cardiac event as compared to men. A gendered approach to investigating cardiovascular disease in women incorporates the unique social, cultural, and economic circumstances that being a woman brings to the health encounter. The multiple roles enacted by many women may be important factors in this health discrepancy. In order to more fully understand the impact of the roles of women on health, a questionnaire was administered to participants of the Heart Awareness for Women group cardiac rehabilitation program which assessed women's role perceptions followed by discussions. We found that caregiving can be both positive and negative. It gives a sense of purpose, meaning, and community connection as well as burden and conflict. Emphasis must be placed on promoting strategies in women to achieve a balance between caregiving responsibilities and prioritisation of cardiovascular health.
The purpose of this experimental study was to test the efficacy of a psychoeducational individual program conceived to facilitate transition to the caregiver role following diagnosis of Alzheimer disease in a relative.
Caregivers were recruited in memory clinics and randomized to an experimental group (n = 62) or a control group (n = 49) receiving usual care. Eligible participants-primary caregivers of a relative diagnosed with Alzheimer in the past 9 months-were assessed blindly before randomization, at the end of the program (post-test), and 3 months later (follow-up) on different outcomes associated with healthy role transition.
The analyses indicated that at post-test and follow-up, caregivers in the experimental group were more confident in dealing with caregiving situations, perceived themselves to be better prepared to provide care and more efficacious in their caregiver role, were better able to plan for the future care needs of their relative, had better knowledge of available services, and made more frequent use of the coping strategies of problem solving and reframing. The program had no significant effect on use of stress-management strategies, perceived informal support and family conflicts.
This program underscores that a proactive intervention approach from the onset of the care trajectory is key to fostering caregiver adaptation to the new challenges they must meet.
Previous research on the care-giver burden experienced by adult children has typically focused on the adult child and parent dyad. This study uses information on multiple informal care-givers and examines how characteristics of the informal care-giving network affect the adult child's care-giver burden. In 2007, 602 Dutch care-givers who were assisting their older parents reported on parental and personal characteristics, care activities, experienced burden and characteristics of other informal care-givers. A path model was applied to assess the relative impact of the informal care-giving network characteristics on the care-giver burden. An adult child experienced lower care-giver burden when the informal care-giving network size was larger, when more types of tasks were shared across the network, when care was shared for a longer period, and when the adult child had no disagreements with the other members of the network. Considering that the need for care of older parents is growing, being in an informal care-giving network will be of increasing benefit for adult children involved in long-term care. More care-givers will turn into managers of care, as they increasingly have to organise the sharing of care among informal helpers and cope with disagreements among the members of the network.
The objective of the research was to construct a conceptual framework that explains the process of personal transformation within a primary care context for people living with chronic illnesses.
A literature search of articles published from 1990 to 2007 in CINAHL, ERIC, Healthstar, MEDLINE, PsycINFO, dissertation abstracts and SocINFO databases, was conducted to identify qualitative research studies investigating personal change in chronic illness or disability. Five hundred and fifty-six articles were identified; the researchers conducted a metasynthesis of a subgroup of these articles whose focus was on transformation in primary care (n = 5).
The metasynthesis project presents a model of the conceptualizations of transformation. Transformation in chronic illness is presented as a process of learning about self and the chronic illness in an iterative and continually changing manner. The primary care context has its greatest influence on critical reflection, which occurs in the first phase (initial response).
This model illustrates the complex processes that occur for someone living with a chronic illness. Health practitioners who understand why and how people transform in living with chronic illnesses will be able to apply this model in determining people's needs and how to assist people during the transformative process.
Little of our empirical knowledge regarding how family caregivers of persons with Alzheimer's disease (AD) manage their self-care needs is grounded in the perspectives of caregivers themselves. Using a grounded theory methodology, we explored self-care behaviors of nine spousal caregivers and developed a substantive theory of finding normalcy for self that reflects how spousal caregivers restore self-care behaviors in the context of a constant state of flux. Self-care worthiness, a new concept, emerged as a salient condition of finding normalcy. This provides a starting point for understanding self-care in spousal caregivers and illuminates the intricate process of caring for self while caring for a significant other with AD.
Chronic illness: reflections on a community-based action research programme
Aim.The purpose of this paper is to describe the birth of a research culture in a community nursing service, and the development and implementation of an action research programme that focuses on understanding the experiences of living with chronic illness.
Background.Approximately 70% of the clients of our community nursing practice in South Australia live with chronic illness. Our research interest has focused on how community nurses can assist people living with chronic conditions to live ‘well’. In this paper we describe the way in which we have applied the principles of participatory action research (PAR) when working with women who live with multiple sclerosis (MS) and urinary incontinence. We then draw on elements of PAR research with men who live with MS and men and women who live with type 2 diabetes. In total, we have convened eight PAR groups researching with people who live in the community with chronic illness and this work constitutes our chronic illness research programme.
Design.The PAR philosophy is based on the principles of democratic, equitable, liberating and life enhancing relations within a research process, and is operationalized in cycles of: look, think and act. In these collaborative inquiries the researchers have facilitated participants to reflect on how illness affects their lives, to tell their own story, make connections, plan action and help them negotiate the rites of passage. We select two areas for discussion: methodological issues in the application of PAR principles and our tentative findings from the chronic illness research programme.
Findings.We assert that the facilitator’s skill in managing group dynamics is crucial to the life and outcome of the project. Change can occur as a result of action at an individual level, with improved self-management of chronic illness, or at a collective level where the PAR group instigates larger reform strategies. In terms of tentative findings, men and women living with a chronic illness appear to be involved in an ongoing process of transition toward incorporating the illness into their lives. Although we have not yet identified specific events, we have noted that there are critical turning points in the illness transition experience. Participants feel validated in telling their story of living with a chronic illness. Story telling may be the turning point that enhances the lives of all those who participate.
Conclusion.If health care professionals can understand the process that facilitates people to move toward incorporating chronic illness into their lives, we can make a substantial contribution to enhance their chronic disease self care management.
A "state of the science" symposium brought together leaders in the two profssions.
There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity. Researchers have also suggested that the combination of loss, prolonged distress, the physical demands of caregiving, and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems, leading to increased mortality.
To examine the relationship between caregiving demands among older spousal caregivers and 4-year all-cause mortality, controlling for sociodemographic factors, prevalent clinical disease, and subclinical disease at baseline.
Prospective population-based cohort study, from 1993 through 1998 with an average of 4.5 years of follow-up.
Four US communities.
A total of 392 caregivers and 427 noncaregivers aged 66 to 96 years who were living with their spouses.
Four-year mortality, based on level of caregiving: (1) spouse not disabled; (2) spouse disabled and not helping; (3) spouse disabled and helping with no strain reported; or(4) spouse disabled and helping with mental or emotional strain reported.
After 4 years of follow-up, 103 participants (12.6%) died. After adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls (relative risk [RR], 1.63; 95% confidence interval [CI], 1.00-2.65). Participants who were providing care but not experiencing strain (RR, 1.08; 95 % CI, 0.61-1.90) and those with a disabled spouse who were not providing care (RR, 1.37; 95% CI, 0.73-2.58) did not have elevated adjusted mortality rates relative to the noncaregiving controls.
Our study suggests that being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality among elderly spousal caregivers. Caregivers who report strain associated with caregiving are more likely to die than noncaregiving controls.
To explore the impact of being a family carer to patients with stage 5 chronic kidney disease managed without dialysis.
Increasing numbers of patients with renal disease worldwide are making the decision not to embark on dialysis. This group has significant physical and psychological symptom burdens similar to or greater than those in advanced cancer patients. Little is known about the impact on family carers.
Exploratory, qualitative design.
The study was undertaken with 19 carers caring for patients managed in a Renal Supportive Care Service in the UK between 2006–2008. Sixty-one semi-structured interviews and detailed field notes inform the analysis.
‘Caring from diagnosis to death’ was the overarching theme illustrated by three sub-themes: (i) Caregiver's plight – making sense of the disease and potential deterioration; (ii) Having to care indefinitely; and (iii) Avoiding talk of death. ‘Caring from diagnosis to death’ coincides with an original concept analysis of renal supportive care, which is considered an adjunct to the management of patients with renal disease at all stages of their illness.
There is a clear need for further research internationally and theory-based nursing interventions to support carers of patients managed without dialysis. The development of a holistic, integrated care pathway based on carer perspectives, which includes identification of information needs related to original diagnosis, associated comorbidities, treatment options, prognosis, and assistance in developing strategies to manage communication with patients as the end of life approaches, is required.
hörnsten å, jutterström L, Audulv Å & Lundman B (2011) Journal of Nursing and Healthcare of Chronic Illness 3, 41–51 A model of integration of illness and self-management in type 2 diabetes
Aim. To describe the process of illness integration and self-management among people with type 2 diabetes.
Background. Integration of illness is a developmental process referring to the emotional and existential aspects of being ill. It is an overarching concept that describes the process that a person undergoes in living with a chronic disease, from prediagnosis to adaptation to illness as a natural part of life. Despite the common use of terms such as illness integration and self-management, there exists little research that investigates how these concepts relate to one another.
Methods. A narrative interview study applying qualitative content analysis was conducted with people diagnosed with type 2 diabetes. The study focused on their personal understandings of illness, and particularly, the relationship of the participants’ illness integration to self-management of the disease. Data were collected in 2002.
Results. In the trajectory from prediagnosis to adaptation, there is a turning point when people seem to integrate the illness emotionally and existentially, and in relation to their self-management practice. The trajectory includes the phases of suspecting illness/being diagnosed, understanding and explaining the illness, and negotiating illness and taking stands about self-management. These phases in turn are influenced by perceptions of the seriousness and threat of the disease; the intensity and nature of the ill person’s emotional response to the disease and its management; goals and expectations for living with the disease and for living in general; and lastly, perceptions of the outcomes and impacts of self-management.
Conclusion. Illness integration and self-management processes develop simultaneously. In some cases, a turning point occurs that causes the person to view self-management as both necessary and feasible.
Relevance to clinical practice. Nurses may influence the illness integration trajectory and assist people with type 2 diabetes to integrate the disease and its management more readily.
Women’s experiences of ‘being diagnosed’ with a long-term illness
Aims. In this paper we share women’s storied accounts of ‘being diagnosed’ with a long-term illness. The purpose of the paper is to raise awareness of health professionals that receiving a medical diagnosis is a potentially calamitous event, challenging self-identity.
Background. The three authors were involved in three separate inquiries which explored women’s experiences of living with illness. The authors realized that ‘being diagnosed’ was a common memorable event for the women across the inquiries. The literature around receiving a diagnosis was scarce.
Design. This paper is the result of secondary analysis of data from three different projects where we researched women living with long-term illness. In this paper, we focus on the experience of ‘being diagnosed’ as we share and show women’s perceptions of receiving a medical diagnosis.
Findings. Receiving a medical diagnosis of a long-term illness was a memorable event in the women’s lives. Many women felt alone with their illness, often without adequate information to find meaning in the relationship between their familiar self and their new identity as a woman living with illness. They felt vulnerable and lost as they tried to understand the meanings and consequences that the diagnosis held for their present and their future. Informational needs may be specific and individual. For many, receipt of a diagnostic label was momentous and should not be underestimated, despite the initial feeling of chaos, many women felt validated.
Conclusion. Receiving a medical diagnosis is one event where health care professionals could be on standby. It is important to take the woman’s articulation of the event seriously. Open, genuine communication, with willingness on behalf of the health professional to listen would be affirming for women who are coming to terms with the diagnosis of a chronic illness.
Abstract This paper examines the meanings of symptoms for people with osteoarthritis. The study comprised 27 in-depth interviews with men and women aged between 51 and 91 years (median age = 76) and draws on previous sociological work about experiences of chronic illness, disability and ageing. In particular, the distinction proposed by Bury between ‘meaning as significance’ (the significance and connotations associated with illness) and ‘meaning as consequence’ (problems created for the individual by activity restriction and social disadvantage), provides a useful framework to examine the biographical aspects of symptoms. We found that older respondents portrayed their symptoms as a normal and integral part of their biography, but they also talked about the highly disruptive impact of symptoms on their daily lives. We consider how these co-existing accounts of meaning make sense in the context of cultural connotations of ageing and the implications for meeting health care needs of older people with osteoarthritis.
Physical pain, psychological distress and the deleterious effects of medical procedures all cause the chronically ill to suffer as they experience their illnesses. However, a narrow medicalized view of suffering, solely defined as physical discomfort, ignores or minimizes the broader significance of the suffering experienced by debilitated chronically ill adults. A fundamental form of that suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones. As a result of their illnesses, these individuals suffer from (1) leading restricted lives, (2) experiencing social isolation, (3) being discredited and (4) burdening others. Each of these four sources of suffering is analysed in relation to its effects on the consciousness of the ill person. The data are drawn from a qualitative study of 57 chronically ill persons with varied diagnoses.
Being a caregiver with responsibility for someone with reduced health compared with not being a caregiver may mean different views of life satisfaction. Knowledge of what leads to reduced life satisfaction in caregivers may be helpful in interventions. Informal caregivers gainfully employed or not, aged 50–89 years, were studied with regard to life satisfaction depending on the extent of caregiving to identify types of social support of value for caregivers. A cross-sectional study was conducted including a sample of 151 informal caregivers with a high caregiving extent, 392 caregivers with a lower caregiving extent and 1258 non-caregivers. The sample was randomly selected to correspond with older Swedes as a whole aged 50–89 years. A questionnaire containing a modified form of Older Americans’ Resources Schedule (OARS) and Life Satisfaction Index Z (LSIZ) was used; 19.6% helped someone with activities of daily living and of these 27% stated that they did so frequently. Frequent caregiving implied significantly higher age, being more often married and retired, than less frequent caregivers and non-caregivers. Frequent caregivers also performed personal activities of daily living (PADL) to a higher extent than less frequent caregivers and had significantly lower LSIZ (mean 14.8) than less frequent caregivers (mean 17.6) and non-caregivers (mean 17.7). No significant differences were found between less frequent caregivers and non-caregivers in LSIZ. One-fourth had support from others, the commonest type being able to converse with a next of kin, and help and advice from professionals. Lower life satisfaction was associated with not being employed, low social resources, not refreshed after a night's sleep, overall poor health and frequent caregiving in the entire sample. High caregiving extent was associated with lower life satisfaction. The most important factors explaining lower life satisfaction among frequent caregivers were having low social resources and having poor health. Economic compensation or payment was the support most desired.
Problems of managing chronic illness at home are addressed in terms of the concept of work: what types and subtypes of work, entailing what tasks, who does them, how, where, the consequences, the problems involved. Three types of work and consequences of their interplay are discussed: illness work, everyday life work, and biographical work. Theoretical concerns of the sociology of work are addressed as well as the substantive issues of managing chronic illness.
This paper reports on a study that explored experiences of women (65-74 years) as they grow older while living with a long-term condition. The phenomenon of focus was 'ageing with a long-term condition', rather than the experience of developing a long-term condition after reaching older adulthood.
People with long-term conditions are living into older age. There is limited literature on the nexus of ageing with a long-term condition. It is known that ageing shapes and is shaped by women's experiences of living with a long-term condition.
In this interpretive descriptive study, nine women participated in a series of three focus groups held in 2007 and 2008. Transcripts were analysed thematically and participants given the opportunity to respond to the analysis.
'In the shadow of ageing' was the overarching theme. The women reported that although their long-term condition remained the referent point in their daily lives, for others including health professionals, the focus was on their appearance and the effects of older age. To overcome the back-grounding of their long-term condition, the women used 'strategies already-in-place'; it became 'just another thing to deal with'. Ageing, however, remained 'a privilege'.
If health professionals focus on age and its concomitant effects, rather than a woman's long-term condition, they are at risk of delivering inappropriate care. They need to be prepared to advocate for the special needs of older women who live with a long-term condition and remain cognizant of the women's resourcefulness and expertise developed over time.
After more than a decade of concerted effort by policy-makers in Canada and elsewhere to encourage older adults to age at home, there is recognition that the ageing-in-place movement has had unintended negative consequences for family members who care for seniors. This paper outlines findings of a qualitative descriptive study to investigate the health and wellness and support needs of family caregivers to persons with dementia in the Canadian policy environment. Focus groups were conducted in 2010 with 23 caregivers and the health professionals who support them in three communities in the Southern Interior of British Columbia. Thematic analysis guided by the constant comparison technique revealed two overarching themes: (1) forgotten: abandoned to care alone and indefinitely captures the perceived consequences of caregivers' failed efforts to receive recognition and adequate services to support their care-giving and (2) unrealistic expectations for caregiver self-care relates to the burden of expectations for caregivers to look after themselves. Although understanding about the concepts of caregiver burden and burnout is now quite developed, the broader sociopolitical context giving rise to these negative consequences for caregivers to individuals with dementia has not improved. If anything, the Canadian homecare policy environment has placed caregivers in more desperate circumstances. A fundamental re-orientation towards caregivers and caregiver supports is necessary, beginning with viewing caregivers as a critical health human resource in a system that depends on their contributions in order to function. This re-orientation can create a space for providing caregivers with preventive supports, rather than resorting to costly patient care for caregivers who have reached the point of burnout and care recipients who have been institutionalised.
The present meta-analytic study gives a systematic review of research on depression and the subjective well-being of caregivers. We integrate results from 60 studies on informal caregivers' subjective well-being (e.g., positive affect, life-satisfaction) and contrast them with the result of studies on caregiver depression. Analyses were based on a two-factor model of subjective well-being that distinguishes between positive and negative dimensions of well-being (e.g., happiness and depression). The strongest effects were domain-specific: uplifts of caregiving were associated with subjective well-being and caregiving stressors were associated with depression. In addition, weaker effects that crossed domains were present: uplifts were weakly associated with depressive symptoms. In addition, lower levels of caregivers' subjective well-being were weakly related to care receivers' physical and cognitive impairments, as well as behaviour problems, but not to the amount of caregiving. Type of care recipients' illness and the measure of well-being moderated, in part, the association between stressors/uplifts and subjective well-being.
This paper presents findings from secondary analysis of longitudinal data on correlates of care relationship mutuality collected from 91 carers of people with Alzheimer's disease and Parkinson's disease in the control group of a randomized trial of home-care skill training.
Many family members and other informal carers are reported to suffer multiple adverse social, financial, psychological and physical caregiving outcomes. High levels of mutuality, the perception that the quality of the care relationship is positive, reportedly ameliorate these negative outcomes.
Multilevel models for change were used to explore whether care recipient functional ability, carer gender, depressive symptoms, kin relation to care recipient (spouse, non-spouse) and years of caregiving experience were related to carers' perceptions of care relationship mutuality over a 12-month period. Data collection took place between 2003 and 2008.
Carers who reported lower mutuality: (1) were caring for care recipients with lower functional ability, (2) had less caregiving experience and (3) had more depressive symptoms.
Informal carers who perceive little mutuality in their relationship with the care recipient may be more likely to terminate care early. Clinicians and researchers should explore the quality of the caregiving relationship as a critical factor in carer and care recipient outcomes. Home-care skill training may need to include relationship-building skills to offset adverse carer outcomes.
To examine what influences self-management priorities for individuals with multiple long-term conditions and how this changes over time.
A longitudinal qualitative study using semi-structured interviews completed with 21 participants with more than one chronic condition.
The study demonstrates the impact of multiple conditions on many aspects of people's illness management. Narratives illuminated how individual's condition priorities changed at pivotal points and altered their engagement with self-management practices. This is influenced by contact with health professionals and how people framed illness and lifestyle changes. Medication management was a central point where individuals took control of their conditions. Additional conditions were more readily accommodated if people established a cognitive link between existing management practices. Thus, multiple conditions were not inevitably experienced as an increasing burden but subject to considerable flux and change.
Prioritizing one condition over another at a particular time together with a transfer and amalgamation of practices appears to facilitate accommodation of multiple conditions and ease the burden of everyday management. These findings have implications for how we understand the variable nature of multimorbidity experience and management for patients. Clinicians might usefully engage with patients' understanding to reduce complexity, and enhance engagement of condition management.
Family caregiving is frequently associated with significant levels of physical, emotional and financial strain. This article examines the health effects of transitions into and out of caregiving in middle age. We conducted a secondary analysis of data from the Australian Longitudinal Study on Women's Health (ALSWH) to examine changes in caregiving status among middle-aged women over a 3-year period, and the correlates and outcomes of these changes. A total of 9,555 middle-aged Australian women were categorised according to caregiving status at two surveys 3 years apart, as Continuing (2.7%); Stopped (4.9%); Started (3.0%); and Never caregivers (89.4%). Analyses at each time point show poorer physical and emotional health, health service use, health behaviours and lower engagement in the paid workforce among all three caregiver groups, indicating that middle-aged women who are, have been, or will become family caregivers are in poorer health than women who do not have these roles. Middle-aged women in poor health tend to be selected into caregiving, probably because they are less engaged with the paid workforce. Poor health and disengagement from the paid workforce continue even when caregiving stops. Health care providers should be particularly conscious of the needs of middle-aged caregivers, who are likely to be in poor health even before they take on the role.
Caregiving is a women's health issue globally, as many more women than men are informal caregivers. Caregiving related to gender role socialization, burden, and economic and health consequences has been discussed in the literature. Together this body of work demonstrates some positive but mainly negative consequences to the health and economic circumstances of women. Overall achievement of the United Nations' Millennium Development Goals has important implications for informal caregivers globally, because achievement of these goals is essential to reducing the undue burden, the lost opportunities, and the injustice of health care systems that take advantage of women's volunteer caregiving.
To explore the experiences of individuals with chronic conditions who are also caring for another person, usually a family member.
A postal questionnaire was distributed to carers across Wales on three occasions approximately 18 months apart. It included the SF-12v2 together with fixed-choice and open-ended questions relating to carer demographics, carer assessment, support needs, services received and care recipient's medical condition. A sub-sample of these carers was invited to take part in face-to-face interviews to allow for more in-depth exploration of their circumstances.
The carers with chronic conditions experienced a decline in their physical health over time whereas the physical health of carers without a chronic condition remained stable. There was also evidence of carers neglecting their own health because of their caring responsibilities. Despite their health problems, over time the carers with chronic conditions received no more support than other carers.
This article indicates that there are carers who are themselves suffering from a physical condition or conditions that suggest they are in need of care. Despite these difficulties, these carers are caring for people with quite severe conditions, without any help above that available to other carers.
Trends in population growth indicate that nurses increasingly will be caring for older adults, especially older women, who are at risk for less than optimal health due to chronic illnesses. The purpose of this qualitative study was to obtain a better understanding of the meaning of
health from the perspective of older women. Focus group interviews with 51 women, aged 55 to 93, were held. Data were analyzed using directed qualitative content analysis. A Rogerian perspective of human health provided the broad conceptual lens for the study. Three themes explicating the
meanings of health emerged from the data: realizing the potential for purpose, listening to energy flow, and purposefully participating in health-related changes. The three themes represented ways in which the women dealt with the paradoxes posed by their chronic illness. Findings captured
the hopeful, although sometimes conflicting, meanings of health among the women as brought forth by experiences with chronic illness and the challenges of aging.
This paper describes the process of 'moving on' when living with a chronic illness or condition. The findings of this study emerged from daily email conversations between six women who live with long term illness and the three researchers during a three month period in 2003. In collaboration with the women, researchers have drawn out seven interrelated themes which are seen to constitute the process of 'moving on'. The concept of readiness to change is discussed as fundamental to the relationship between potential learning as a result of living with illness and 'moving on'. We conclude that health workers are in a strong position to facilitate the learning that will assist people to 'move on' and incorporate illness as an ordinary part of life.
Older adults are at high risk for developing chronic illnesses; those older than 85 are also the most rapidly growing segment of the US population. The majority of care for older adults with disabilities is provided in the community by family caregivers, as well as spouses if they are available. Although there has been significant research on the effect of caregiving on spousal health, few studies have addressed the health promotion needs of spousal caregivers. More research is needed to study health-promoting behaviors in the context of the social and physical environments in which spousal caregivers live and work.
The average older adult reaches age 65 with at least two chronic, co-occurring illnesses, or multiple morbidities (MM). We currently lack critical information about the specific strategies older adults use to attempt to control these MM. To increase our understanding of how older adults attempt to manage these MM and retain control of their health, in-depth interviews were conducted with 41 Black and White middle aged and older men and women with MM. We were particularly interested in representing the experience of those groups more vulnerable to adverse health outcomes due to greater disease prevalence and low income. During in-depth interviews, we asked open-ended questions on life and health history and open-ended and semi-structured questions about self-care for multiple morbidities. Participants expressed a strong desire to remain in control of their health; to do so they employed a wide range of strategies including cognitive structuring techniques (being health vigilant, normalizing, resignation/relinquishing control, and social comparison), self-care activities (emphasizing diet, exercise, medication taking, modifying existing activities, going to the doctor), and faith orientations (prayer as a constructive support strategy, gaining strength from God, church as a central part of life). With the exception of faith orientations, there were no race/ethnicity differences in the strategies participants use. Future studies should expand on this knowledge by exploring the contextual, cultural, and psychological backdrop and characteristics that shape the use of these coping strategies.
The trajectory framework developed by Strauss and associates provides a conceptual basis for developing a nursing model that gives direction for practice, teaching, and research in the area of chronic illness. This paper presents an overview of the trajectory framework and shows how it can be used to generate such a nursing model.