Complex adaptive chronic care

Background The Chronic Care Model (CCM) is widely taken up as the universal operational framework for redesigning health systems to address the increasing chronic disease burden of an ageing population. Chronic care encompasses health promotion, prevention, self management, disease control, treatment and palliation to address ‘chronicity’ of long journeys through disease, illness and care in the varying contexts of complex health systems. Yet at an operational level, CCM activities are predominantly based on an evidence‐base of discreet chronic disease interventions in specific settings; and their demonstrable impact is limited to processes of select disease management such as diabetes in specific disease management programs. Aims This paper proposes a framework that makes sense of the nature of chronicity and its multiple dimensions beyond disease and argues for a set of building blocks and leverage points that should constitute the starting points for ‘redesign’? Findings Complex Adaptive Chronic Care is proposed as an idea for an explanatory and implementation framework for addressing chronicity in existing and future chronic care models. Chronicity is overtly conceptualized to encompass the phenomena of an individual journey, with simple and complicated, complex and chaotic phases, through long term asymptomatic disease to bodily dysfunction and illness, located in family and communities. Chronicity encompasses trajectories of self‐care and health care, as health, illness and disease co‐exist and co‐evolve in the setting of primary care, local care networks and at times institutions. A systems approach to individuals in their multi‐layered networks making sense of and optimizing experiences of their chronic illness would build on core values and agency around a local vision of health, empowerment of individuals and adaptive leadership, and it responds in line with the local values inherent in the community's disease‐based knowledge and the local service's history and dynamics. Complex Adaptive Chronic Care exceeds the current notions of disease management as an endpoint. Primary care team members are system adaptors in partnership with individuals constructing their care and system leadership in response to chronic illness, and enable healthy resilience as well as personal healing and support. Outcomes of complex adaptive chronic care are the emergence of health in individuals and communities through adaptability, self‐organization and empowerment. Discussion Chronic care reform from within a complex adaptive system framework is bottom up and emergent and stands in stark contrast to (but has to co‐exist with) the prevailing protocol based disease care rewarding selective surrogate indicators of disease control. Frameworks such as the Chronic Care Model provide guidance, but do not replace individual experience, local adaptive leadership and responsiveness. The awareness of complexity means opening up problems to a different reality demanding different set of questions and approaches to answer them.     

The quest for well‐being: self‐identified needs of women in chronic pain

Scand J Caring Sci; 2011; 25; 81–91
The quest for well‐being: self‐identified needs of women in chronic pain Women suffer more chronic pain in most Western countries than men, with considerable consequences for the sufferers. The aim of this phenomenological research was to study self‐reported needs of women in chronic pain. The data consisted of ten in‐depth interviews, which lasted from 60 to 120 minutes each, with five women in chronic pain, aged 36–53. Twelve needs were identified in the study, which were categorized into three clusters of needs or major quests: The quest to learn to live with the pain, which involves the need for diagnosis; the need to find effective treatment and keep the pain tolerable; the need for helpful advice and information and the need to take care of self and for a different pace and a new life pattern. The quest for support, caring and connection which involves the need for someone close who cares; the need to be connected to others and have someone to care for; the need for practical support e.g. financial support and household assistance and the need for professional support and caring. Finally, the quest for normalcy which involves the need to avoid the sick role and maintain a sense of dignity; the need to focus on personal strengths and prevent discouragement and depression; the need to be involved in decision‐making regarding own care and treatment and the need to participate in family and social activities to fight isolation and loneliness. The overriding theme in all these quests is the quest for well‐being; physically, mentally, emotionally and socially. Conflicting needs created five major dilemmas in the women’s lives. Women in chronic pain may be seen in any clinical setting and health professionals need to be able to recognize their needs in order to be able to give effective care, to cooperate with them and empower them.     

An integrative review and theoretical examination of chronic illness mHealth studies using the Middle‐Range Theory of Self‐care of Chronic Illness

Self‐management, or self‐care, by individuals and/or families is a critical element in chronic illness management as more care shifts to the home setting. Mobile device‐enhanced health care, or mHealth, is being touted as a means to support self‐care. Previous mHealth reviews examined the effect of mHealth on patient outcomes, however, none used a theoretical lens to examine the interventions themselves. The aims of this integrative review were to examine recent (e.g., last 10 years) chronic illness mHealth empiric studies and (1) categorize self‐care behaviors engaged in the intervention according to the Middle‐Range Theory of Self‐care of Chronic Illness, and (2) conduct an analysis of gaps in self‐care theory domains and behaviors utilized. Methods included: (1) Best practice study identification, collection, and data extraction procedures and (2) realist synthesis techniques for within and across case analysis. From a pool of 652 records, 33 primarily North American clinical trials, published between 2010 and 2019 were examined. Most mHealth interventions used apps, clinician contact, and behavioral prompts with some wireless devices. Examination found self‐care maintenance behaviors were supported in most (n = 30) trials whereas self‐care monitoring (n = 12) and self‐care management behaviors (n = 8) were less so. Few trials (n = 2) targeted all three domains. Investigation of specific behaviors uncovered an overexamination of physical activity and diet behaviors and an underexamination of equally important behaviors. By examining chronic illness mHealth interventions using a theoretical lens we have categorized current interventions, conducted a gap analysis uncovering areas for future study, and made recommendations to move the science forward.     

Self-care ability among home-dwelling older people in rural areas in southern Norway

Scand J Caring Sci; 2012; 26; 113–122
Self‐care ability among home‐dwelling older people in rural areas in southern Norway Introduction: The growing number of older people is assumed to represent many challenges in the future. Self‐care ability is a crucial health resource in older people and may be a decisive factor for older people managing daily life in their own homes. Studies have shown that self‐care ability is closely related to perceived health, sense of coherence and nutritional risk. Aim: The aim of this study was to describe self‐care ability among home‐dwelling older individuals living in rural areas in southern Norway and to relate the results to general living conditions, sense of coherence, screened nutritional state, perceived health, mental health and perceived life situation. Methods: A cross‐sectional survey was carried out in rural areas in five counties in 2010. A mailed questionnaire, containing background variables, health‐related questions and five instruments, was sent to a randomly selected sample of 3017 older people (65+ years), and 1050 respondents were included in the study. Data were analysed with statistical methods. Results: A total of 780 persons were found to have higher self‐care ability and 240 to have lower self‐care ability using the Self‐care Ability Scale for the Elderly. Self‐care ability was found to be closely related to health‐related issues, self‐care agency, sense of coherence, nutritional state and mental health, former profession, and type of dwelling. Predictors for high self‐care ability were to have higher self‐care agency, not receiving family help, having low risk for undernutrition, not perceiving helplessness, being able to prepare food, being active and having lower age. Conclusions: When self‐care ability is reduced in older people, caregivers have to be aware about how this can be expressed and also be aware of their responsibility for identifying and mapping needs for appropriate support and help, and preventing unnecessary and unwanted dependency.     

Health promotion behavior in middle‐aged Koreans: A cross sectional survey

This cross‐sectional study was conducted to verify self‐efficacy, self‐esteem, and social support as characteristics of health promotion behavior in middle‐aged Koreans, and the influence of social support on self‐efficacy and self‐esteem with respect to health promotion behavior. Data were collected from 310 subjects in South Korea using a self‐administered questionnaire. We found a significant finding that self‐efficacy positively influences health promotion behavior, focusing on the moderating effect of social support. Self‐efficacy affected health promotion behavior (P < 0.01) as did social support. Mean self‐efficacy, self‐esteem, health promotion behavior, and social support scores were 50.27, 29.35, 124.39, and 76.51, respectively. This finding provides strong evidence that social support can be used as a model to understand health promotion behavior. Individualized nursing interventions based on social support and self‐efficacy theory should be utilized in high‐risk middle‐aged patients so as to assist and improve health promotion behavior. Also, in community practice settings, nurses should consider that increased social support and self‐efficacy are required to improve health promotion behaviors.     

Managing Chronic Disease in Affordable Primary Care

National agencies are calling for quality improvement in primary care health care services and across the United States health care system. Changes would be directed toward improving quality of life for the chronically ill and decreasing their financial burden and that placed on society. Nurse practitioners, based on their expertise and preparation in patient education, are ideal health care providers to establish partnerships with motivated, informed, chronically ill patients and to promote change in health care policy, guidelines, and meeting patient educational needs. Within worksite primary care, nurse practitioners can, through the Chronic Care Model framework, provide chronic disease management and affordable health care access.     

“We are always asked; ‘where are you from?’”: Chilean women’s reflections in midlife about their health and influence of migration to Sweden

Scand J Caring Sci; 2010; 24; 445–453
“We are always asked; ‘where are you from?’”: Chilean women’s reflections in midlife about their health and influence of migration to Sweden Aim: This study explored how Chilean immigrant women living in Sweden perceived and related their life situations and health status during midlife to their migration experiences. Method: Three focus group discussions (FGDs) were performed with 21 middle‐aged Chilean women (40–60 years) who had lived in Stockholm for at least 15–20 years. In‐depth interviews were held with three key informants. A combination of manifest and latent content analysis was performed to structure and categorize the tape‐recorded and transcribed data. Findings: Three main themes emerged from the data: (i) Chilean women’s reflections about migration and resettlement; (ii) Health during midlife; perceptions of Chilean women living in Sweden; and (iii) Strategies to manage their lives and to gain social acceptance and position. The Chilean women reflected about the discrimination they had met in the Swedish society and within the health care system along with health changes they had had during midlife. They connected some of their health related problems to their hardships of migration. They also expressed confusion about the health care they had received in Sweden including conflicting and mistrusting relationship with some health care providers. Important for their way of coping with their own health seemed to be a recognition of their own space, level of independence, self‐acceptance and awareness of power relationships. Conclusion: The results illuminate the importance of awareness of influence of gender and socio‐cultural aspects, power relationships and communication skills among health care providers on women’s health. Complementary interventions to the biomedical paradigm are needed and should be addressed in Swedish health staff educational programmes as well as in clinical training.     

Self‐care follows from compassionate care – chronic pain patients’ experience of integrative rehabilitation

The long‐term outcome of any intervention for people suffering from chronic pain relies on the patient's ability for self‐care. This study explores patient experiences of self‐care in relation to a rehabilitation programme at an anthroposophic clinic. In a qualitative interview study with a hermeneutic approach, individual interviews were conducted, recorded, transcribed verbatim and analysed. Interviews were conducted with ten women who were taking part in a year‐long rehabilitation programme for chronic pain and overlapping illness. The women told stories of suffering with a focus on lives that were not functioning well. In this context, pain is like secondary. For many, the experience of loving care at the clinic became a turning point, a chance to be vulnerable, to be recognised, to reflect and to begin life anew. Signs of self‐care could then be witnessed. The women described a process whereby they regained contact with their bodies and their fellow human beings; they were able to identify their needs and when to stand up for them. Everyday life at the clinic is guided by universal aspects of love, life and meanings. The care gives patients glimpses of a move towards community in contrast to past isolation, towards love in contrast to past alienation, and towards joy and inspiration in contrast to past suffering. Through receiving caritative and compassionate care, these women were able to identify their needs as a first step towards self‐care. In the context of chronic pain, self‐care needs to be more than advice, education and training. Health can be attained when the sufferer experiences what it is to be cared for. This study supports the potential of a caritative caring culture to help patients participate in a compassionate community both with others and with the self. This forms the basis for the reawakening of their natural self‐care ability.     

A critical analysis of health promotion and ‘empowerment’ in the context of palliative family care‐giving

STAJDUHAR K, FUNK L, JAKOBSSON E and ÖHLÉN J. Nursing Inquiry 2010; 17 : 221–230
A critical analysis of health promotion and ‘empowerment’ in the context of palliative family care‐giving Traditionally viewed as in opposition to palliative care, newer ideas about ‘health‐promoting palliative care’ increasingly infuse the practices and philosophies of healthcare professionals, often invoking ideals of empowerment and participation in care and decision‐making. The general tendency is to assume that empowerment, participation, and self‐care are universally beneficial for and welcomed by all individuals. But does this assumption hold for everyone, and do we fully understand the implications of health‐promoting palliative care for family caregivers in particular? In this study, we draw on existing literature to highlight potential challenges arising from the application of ‘family empowerment’ strategies in palliative home‐care nursing practice. In particular, there is a risk that empowerment may be operationalized as transferring technical and medical‐care tasks to family caregivers at home. Yet, for some family caregivers, a sense of security and support, as well as trust in professionals, may be equally if not more important than empowerment. Relational and role concerns may also at times take precedence over a desire for empowerment. The potential implications of ‘family empowerment’ are explored in this regard. ‘Family empowerment’ approaches need to be accompanied by a strong understanding of how to best support individual palliative family caregivers.     

Reliability,validity and factor structure of the Appraisal of Self‐Care Agency Scale – Revised (ASAS‐R)

Rationale, aims and objectives Self‐care agency is a fundamental concept in nursing and health care research. Having self‐care agency enhances an individual's health‐promoting behaviours and/or specific capabilities for chronic disease self‐management. The purpose of this study was to continue the development and psychometric testing of the Appraisal of Self‐Care Agency – Revised (ASAS‐R). Methods A cross‐sectional methodological design was used to examine the reliability, validity and factor structure of the ASAS‐R among individuals from the general population. The sample consisted of 629 adults who were randomly selected to conduct an exploratory factor analysis (EFA; n = 240) and a confirmatory factor analysis (CFA; n = 389) of the scale. A demographic questionnaire, the ASAS‐R and the Health‐Promoting Lifestyle Profile (HPLP‐II) were the measures used to collect the data. Results The final 15‐item three‐factor ASAS‐R had an overall Cronbach's alpha (α) of 0.89. The three factors extracted, rotated and scored in this study were labelled: having power for self‐care, developing power for self‐care and lacking power for self‐care. All inter‐items and item‐to‐total correlations met recommended criteria of r = 0.30 to r = 0.70, except for one of the items that had an item‐to‐total correlation of 0.71, slightly exceeding the maximum recommended item‐to‐total correlation. The three factors had Cronbach's alphas of 0.86, 0.83 and 0.79, respectively. The three factors together explained 61.7% of the scale items variance. Each item of the scale had a strong factor loading ranging from 0.52 to 0.81. All measures of model fit exceeded the recommended criteria, indicating that the 15‐item ASAS‐R had a very good fit (χ²/d.f. = 1.97, GFI = 0.94, AGFI = 0.92, CFI = 0.96, TLI = 0.95, RMSEA = 0.05, RMR = 0.05 and the PCLOSE = 0.48). Conclusions The 15‐item three‐factor ASAS‐R is a short, reliable and valid instrument to measure self‐care agency among individuals from the general population, but further psychometric evaluation is needed among individuals with chronic diseases, especially those with diabetes mellitus.     

Qigong practice among chronically ill patients during the SARS outbreak

Aims and objectives. This research aimed at exploring the motivations and experiences of chronically ill participants practising qigong during the severe acute respiratory syndrome outbreak in Hong Kong. Background. Although biomedicine is the mainstream medical system in Hong Kong, many people employ complementary and alternative medicine in dealing with their chronic health problems. Practising qigong is one of the most popular forms of complementary and alternative medicine used among chronically ill patients. Little is known about the experiences of the chronically ill patients practising qigong in the severe acute respiratory syndrome outbreak and even less is known how this practice is related to the social context of Hong Kong during the outbreak. Design and methods. Qualitative methods using participant‐observation from three qigong classes in Hong Kong and in‐depth semi‐structured interviews with 30 participants were employed. Content analysis and discourse analysis were used to identify major themes of the data. Results. Both the underlying and trigger motivations could motivate these chronically ill participants to practise qigong. Legitimacy of qigong in health maintenance, deterioration of health and unpleasant experiences in biomedical treatment on their chronic illnesses served as the underlying motivations. Stigmatization of and discrimination against the chronically ill and the sense of searching coping strategy during the severe acute respiratory syndrome outbreak further motivated their practice. Conclusion. To the participants, practising qigong not only could strengthen their health, but was also a coping strategy for them to regain an active control and the sense of security in their health and enabled them to overcome the social stigmatization and discrimination during the outbreak. Relevance to clinical practice. Searching for emotional support and a more active role in health conditions could be seen from the chronically ill participants. Understanding and paying more attention to the particular needs of the chronically ill patients can enable health‐care professionals to provide better care and support for the chronically ill during an epidemic crisis.     

Cancer informational support and health care service use among individuals newly diagnosed: a mixed methods approach

Aim To report on the integration of quantitative and qualitative findings to increase understanding of the role of cancer informational support and use of health care services among individuals newly diagnosed with breast or prostate cancer. Methods A mixed methods sequential design was used. First, a quantitative secondary analysis considered self‐report data from a large number of individuals newly diagnosed with cancer (n = 250); next, a follow‐up, in‐depth qualitative inquiry with distinct individuals also newly diagnosed was conducted (n = 20); last, using a quantitative‐hierarchical strategy, quantitative and qualitative findings were merged and re‐analyzed. Results Quantitative analyses showed significant relationships between informational support and health care services. For instance, individuals who received more intense cancer informational support [face‐to‐face and information technology (IT)] spent more time with nurses. Women with breast cancer as opposed to men with prostate cancer also were found to rely primarily on nurses for cancer information and information on health services available, whereas men relied mostly on their oncologists. In‐depth interviews revealed that informational support could be construed as positive, unsupportive, or mixed depending on context. The mixed design analysis documented positive experiences for individuals who reported to be better prepared for consultations and treatments with information provided by more than one source. Negative experiences with physicians were reported by both women and men but the former was about quality of cancer information provided and the latter in terms of quantity. Conclusions A mixed methods approach allowed a deeper understanding of the role of informational support on subsequent use of health care services by individuals with cancer. Further studies may include other types of cancer and diverse background characteristics to clarify how informational support and subsequent use of health services may be jointly determined by these factors.     

The role of specialist and general nurses working with people with multiple sclerosis

Aim. To describe the perceived role of nurses and other carers of people with multiple sclerosis from the perspective of different stakeholders (people with multiple sclerosis, non‐specialist nurses, specialist nurses and other health care professionals). Background. Multiple sclerosis is one of the commonest causes of disability in young adults. People with multiple sclerosis require supportive care during the disease trajectory. The role of different health and social care providers has not been reported previously. Design. Survey. Method. Questionnaire data collected in 2002 during the first phase of scale development (health professionals n = 459; people with multiple sclerosis n = 65; total response rate 59·4%). The data were reanalysed to compare responses across sample groups. Results. There was consensus that neurologists and specialist nurses were the most appropriate professionals in the provision of specialist care with specialist nurses also being identified as key providers of emotional support. However, there were also significant differences in nominations reflecting the different perspectives of the stakeholder groups and a self‐report bias. Each stakeholder group frequently emphasised their own perceived contribution to care. The different perspective of people with multiple sclerosis was also noteworthy with their greater emphasis on social care and lay support. Conclusions. The findings indicate a dissonance in the views of different stakeholders within the care system. The division of labour associated with nursing care requires further exploration. The contrasting paradigms of health care professionals and people with multiple sclerosis regarding models of disability were highlighted. Relevance to clinical practice. Multiple sclerosis, like other chronic illnesses, requires substantial nursing care. There is a growing number of specialist nurses in the workforce, however, little is known how their role interfaces with other nurses.     

Recovery Camp: Assisting consumers toward enhanced self‐determination

Mental health consumers are often socially isolated and may lack the basic leisure competencies which serve as a critical building block for community (re)integration. Therapeutic recreation (TR), as a treatment modality for people with mental illness, is yet to be fully embraced in the Australian health‐care setting, despite having a strong historical foundation in North America. A team of academics created a TR experience, termed Recovery Camp, which was designed to collectively engage consumers and future health professionals drawn from a range of discipline areas. The 2014 Recovery Camp was staged over a five day period and involved 28 adult consumers living with mental illness. Consumers undertook a diverse range of experiential recreation activities engineered to facilitate individual engagement and to encourage the development of positive therapeutic relationships and teamwork. The camp atmosphere was deliberately community‐based and recovery‐oriented, valuing the lived experience of mental illness. Using a 2 × 3 design involving a camp and comparison group, the study sought to examine the influence of a TR programme on the self‐determination of individuals with a mental illness. Those who participated in the Recovery Camp reported an increase in awareness of self and perceived choice post‐camp, relative to the comparison group. While this difference remained significant for awareness of self at three‐month follow‐up, there was no significant difference in perceived choice between the two groups at follow‐up. Study findings serve to support the role of recreation within a recovery framework to positively change the health‐related behaviour of mental health consumers.     

Community Outreach and Engagement Strategies from the Wisconsin Study Center of the National Children's Study

The purpose of this methods article was to describe and evaluate outreach and engagement strategies designed to initially build county‐wide awareness and support for the National Children's Study (NCS or the study) and subsequently to target the segment communities where recruitment for the study occurred. Selected principles from community outreach, social marketing, and health care system and personal referral formed the foundation for the strategies. The strategies included a celebration event, community advisory board, community needs assessment, building relationships with health care providers and systems, eliciting a network of study supporters, newsletters, appearances at local young family‐oriented events (health fairs, parades), presentations to local community leaders, community forums, “branding” with assistance from a women‐owned local marketing firm, and mailings including an oversized, second‐touch postcard. Six months after study launch, approximately 4,600 study‐eligible women were asked in a door‐to‐door survey if and how they became aware of the study. On average, 40% of eligible women reported being aware of the study. The most frequently cited strategy to cultivate their awareness was study‐specific mailings. Awareness of the NCS increased by 7.5% among those receiving a second‐touch postcard relative to controls (95% CIs [4.9, 10.7] z = 5.347, p < 0.0000, d = 0.16). Community outreach and engagement strategies, in particular the oversized postcard as a second‐touch effort, may be used effectively by researchers for participant recruitment and by public health nurses for delivery of important population‐focused messages.     

‘I was broken in so many different ways’: The intersection of complex factors impacting homeless and at-risk African American women's mental health and well-being

African American women are at higher risk of poor mental ill health compared with other racial and ethnic groups in the United States. For low-income and homeless African American populations, the risk of poor mental ill health is even higher. The purpose of our study was to learn what programmes at a long-term transitional living centre helped at-risk and homeless African American mothers to succeed on their own, in accordance with self-identified goals. We conducted ten focus group interviews with 39 graduates of a long-term transitional living centre located in a Midwestern city, and an individual interview with the founder of that centre (N = 40). Our study was informed by Black Feminist Thought, Life Course Theory, and an instrumental case study design. Thematic analysis was used to identify patterns in the qualitative data collected. Findings pertaining to mental health included impacts of adverse childhood experiences, lack of social networks, child placement in foster care, and implications on self-esteem and self-worth. Our findings demonstrate the need for healthcare providers to take into account the intersecting factors facing African American women experiencing homelessness undergirded by systemic racism, which impacts their mental health and well-being.     

Experiences of self‐stigmatization and parenting in Chinese mothers with severe mental illness

Mental health stigma has serious ramifications on people with a severe mental illness (SMI). Stigma damages self‐esteem, recovery outcomes, family relationships, socialization abilities, access to housing, and career prospects. The cultural tendencies of Chinese people have been shown to be associated with particularly high levels of stigmatization. These cultural tenets can result in high levels of self‐stigma due to experiencing shame and a perceived need to keep mental illness a secret. Although there is a lack of existing evidence, it is possible that such experiences present unique challenges to Chinese mothers diagnosed with SMI when they parent their children. Therefore, this qualitative study explored the experiences of parenting and self‐stigmatization of Chinese mothers with SMI. Individual semi‐structured interviews were conducted with 15 mothers who were direct carers of their children aged under 18 and who were receiving community‐based care in Hong Kong. Manual inductive thematic analysis was used to analyse the interview data. Three main themes related to self‐stigmatization emerged from the interviews: (i) distancing and being distanced; (ii) doubting myself; and (iii) struggling for control. The experiences of self‐stigmatization appeared to damage these mothers’ self‐efficacy, which may negatively affect their parenting self‐esteem, tendency to seek professional help, and ability to manage their own mental health. Strategies to improve self‐efficacy, including psychoeducation, and additional childcare support/resources are required for mothers with SMI so they can better manage and balance the demands of motherhood and their mental healthcare needs.