Great expectations: a position description for parents as caregivers: Part I

Parents caring for a child with a chronic condition must attend to a myriad of day-to-day management responsibilities and activities. This two-part series examines parental roles and responsibilities in detail. Part I will review both the adult and pediatric family caregiving literature. It will also describe four major caregiving responsibilities with associated tasks in both direct and indirect illness-related care, which parents are expected to perform when caring for a child with a chronic condition. These are: (a) managing the illness; (b) identifying, accessing, and coordinating resources; (c) maintaining the family unit; and (d) maintaining self. Part II (to be published in the next issue of Pediatric Nursing) will present a multifaceted list of parent caregiving management responsibilities and associated activities drawn from the literature. Clinical nursing implications associated with caregiver responsibilities and tasks will also be addressed.     

Filial piety and parental responsibility: an interpretive phenomenological study of family caregiving for a person with mental illness among Korean immigrants

Background

Despite the strong influence of culture on family involvement in disease management, few studies have examined how immigrant families care for persons with mental illness. The purpose of this study was to examine how immigrant families organize their world to care for a mentally ill person in the United States. The current analysis focused on how Confucian notions of filial piety and parental obligation shape caregiving in Korean immigrant families.

Methods

Participants in this interpretive phenomenological study were comprised of six Korean immigrant women caring for a family member with mental illness. Participants provided narratives that illustrate challenges and opportunities in caring for their mentally ill family member.

Results

Three family caregiving patterns were discerned. Insulating from the outside world describes a family’s effort to accept a member's illness and to manage it within the family. Prioritizing education over well-being concerns parental commitment to the Confucian priority of educating one’s children. Reciprocating the sacrifice describes how a family adapts and enacts filial piety.

Conclusion

The findings of this study warrant further study to examine the influence of Confucianism among Korean American families. The three patterns of caregiving are strongly aligned with Confucian notion of family and family engagement. These patterns may help health providers to anticipate the needs of and provide individualized, culturally appropriate mental health care for patients with mental illness and their families of Korean origin.

     

Trapped like a butterfly in a spider's web: Experiences of female spousal caregivers in the care of husbands with severe mental illness

Aims and objectives

To explore the experiences of female spousal caregivers in the care of husbands with severe mental illness.

Background

Family involvement in the care of patients with chronic illness is essential to provide a backbone of support for them. However, little is known about how female spousal caregivers are confronted with challenges while taking care of their husbands with severe mental illness.

Design

An exploratory qualitative study.

Methods

Fourteen female spousal caregivers of people with severe mental illness (defined here as schizophrenia, schizoaffective disorders and bipolar affective disorders) were recruited using purposive sampling and were interviewed using a semistructured in‐depth interview method. Data were analysed by conventional content analysis until data saturation was achieved.

Results

Care of a husband with severe mental illness had a disruptive influence on the emotional relationships of the family and resulted in emotional detachment over time. Despite the caregivers’ struggle to protect their families, the lack of supportive resources caused emotional exhaustion. Caregiving tasks interfering with their many other responsibilities, along with being a reference for family matters, led to loss of self. Consequently, they experienced psychological distress because of the transition to a caregiver role without any supportive resources.

Conclusion

Constant caring, without supportive resources, forced them to do various roles and manage other issues within the family. Being unprepared for a caregiving role led to the psychological distress of female spousal caregivers. Therefore, adequate information, education and supportive resources must be provided for spouses to facilitate their transition to caregiving roles.

Relevance to clinical practice

It is necessary to pay close attention to the spousal caregivers’ own mental health problems while they care for their mentally ill husbands. Mental health professionals should adopt a new approach to the prioritisation and planning of policies that support both family caregivers and patients.

     

The diversity of family health: constituent systems and resources

The purpose of this study was to explore changes in family health associated with child's chronic illness and hospitalization. The aim was to answer the following questions: (i) What kind of changes do families experience when a child in the family is afflicted by a chronic illness; and (ii) What kind of changes do families experience when their child is admitted to hospital? The data were collected in 2002 in interviews with 29 such families whose children were receiving treatment or who had previously received treatment on the paediatric wards of two hospitals in Finland. Data were collected until reaching theoretical saturation, in which no additional data are found. Data analysis was based on the grounded theory method, proceeding to the stage of axial coding. Family health was formed out of two different dimensions: the constituent systems and the resources of family health. The constituent systems describe the impact of the child's chronic illness and period of hospitalization at the level of both individual family members and the family as a whole. These systems were described by five categories: (i) ill child at the centre of family attention, (ii) siblings in a minor role, (iii) the child's illness governs parental well‐being, (iv) the roller coaster of the couple relationship and (v) the whole family is ill. The resources promoting and maintaining family health were divided into six different categories: (i) creative and maintaining mental images, (ii) active involvement, (iii) internal coping means, (iv) reinforcement of coping means, (v) awareness and change of values and (vi) social network shares emotional burden and responsibility for care. The results of the study show that family health is highly vulnerable when a child has to be admitted to hospital because of a chronic condition. They should help nursing staff gain a clearer picture of the depth and diversity of family health and support the resources that promote family health. Future research should study the methods of family nursing used in the care of families with children with chronic conditions.     

Competing demands for time and self-care behaviors, processes of care, and intermediate outcomes among people with diabetes: Translating Research Into Action for Diabetes (TRIAD)

OBJECTIVE

To determine whether competing demands for time affect diabetes self-care behaviors, processes of care, and intermediate outcomes.

RESEARCH DESIGN AND METHODS

We used survey and medical record data from 5,478 participants in Translating Research Into Action for Diabetes (TRIAD) and hierarchical regression models to examine the cross-sectional associations between competing demands for time and diabetes outcomes, including self-management, processes of care, and intermediate health outcomes.

RESULTS

Fifty-two percent of participants reported no competing demands, 7% reported caregiving responsibilities only, 36% reported employment responsibilities only, and 6% reported both caregiving and employment responsibilities. For both women and men, employment responsibilities (with or without caregiving responsibilities) were associated with lower rates of diabetes self-care behaviors, worse processes of care, and, in men, worse HbA_1c.

CONCLUSIONS

Accommodations for competing demands for time may promote self-management and improve the processes and outcomes of care for employed adults with diabetes.Diabetes self-management entails a complex set of health behaviors. For people living with young children or dependent adults and for those who work outside the home, caregiving responsibilities and/or expectations in the workplace may be barriers to self-management (1).We conducted a cross-sectional analysis using data from Translating Research Into Action for Diabetes (TRIAD), a multicenter prospective observational study of diabetes care in managed care, to assess whether there are associations between competing demands for time and diabetes self-care behaviors, processes of care, and intermediate health outcomes.     

Caring for Individuals Using Home Ventilators: An Appraisal by Family Caregivers

This article describes a study of the effects of caregiving on family members who assumed primary responsibility for managing the care of ventilator-assisted individuals in the home. Thirteen caregivers were interviewed and five variables associated with their role were assessed: caregiving tasks, burden of caregiving, impact of caregiving, mastery of the caregiving role, and satisfaction with caregiving. Data were collected using the Caregiving Appraisal Scale (CAS), a list of caregiving tasks, and a semistructured interview. Caregivers assumed multiple responsibilities for individuals who were completely ventilator-dependent (n = 5), partially ventilator-dependent (n = 3), or nocturnally ventilated (n = 5). Caregivers reported feeling moderate levels of both the burden and the negative impact of caregiving but a positive sense of mastery and satisfaction. They described problems with home healthcare nurses, insurance coverage, and equipment suppliers. Lack of preparation, in terms of education provided by healthcare professionals, limited their ability to manage these problems quickly and effectively. Caregivers suggested that healthcare providers expand discharge planning to include provision of problem-solving strategies.     

Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients

Many family caregivers are unprepared for the death of their loved one and may suffer from worse mental health as a result. We therefore sought to determine the factors that family caregivers believe are important to preparing for death and bereavement. Focus groups and ethnographic interviews were conducted with 33 family caregivers (bereaved or current) of terminally ill patients. The interviews were audiotaped, transcribed, and analyzed using the constant comparative method. Life experiences such as the duration of caregiving/illness, advance care planning, previous experiences with caregiving or death, and medical sophistication all impacted preparedness, or the degree to which a caregiver is ready for the death and bereavement. Regardless of life experiences, however, all caregivers reported medical, practical, psychosocial, and religious/spiritual uncertainty. Because uncertainty was multidimensional, caregivers often needed more than prognostic information in order to prepare. Communication was the primary mechanism used to manage uncertainty. Good communication included clear, reliable information, combined with relationship-centered care from health care providers. Finally, preparedness had cognitive, affective, and behavioral dimensions. To prepare, some caregivers needed information tailored to their uncertainty (cognitive), others needed to "mentally" or "emotionally" prepare (affective), and still others had important tasks to complete (behavioral). In order to better prepare family caregivers for the death of a loved one, health care providers must develop a trusting relationship with caregivers, provide them with reliable information tailored to their uncertainty, and allow time for caregivers to process the information and complete important tasks.     

Meeting a primary care challenge in the United States: chronic illness care

Leading health care experts in the United States have stated that the greatest primary care challenge today is meeting the complex needs of patients with chronic illness/long-term conditions or impairment.To address this challenge, there is a need for health care system redesign that requires a multidisciplinary team approach, including active participation from professional nurses. In particular, it is essential for advanced practice nurses to provide leadership in health systems design for which they are specifically trained and experienced. In this article, the primary care challenge related to chronic illness care management is addressed. Future implications for community-based, chronic illness care delivery and the education of future health care providers with a focus on advanced practice nurses will also be discussed.     

The relationship between caregiving and employment. A study of stress in employed and unemployed caregivers of elderly persons

The need for persons to provide care on an informal basis to frail and dependent elderly persons has generated a "caregiving crisis" in this country. Middle age women, the traditional caregivers for most generations, are no longer readily available to provide informal care. Instead, they are likely to be struggling to cope with the dual demands of paid employment and family responsibilities. Significant differences exist between employed and unemployed caregivers in relation to age, marital status, gender, personal health status, and caregiver-care recipient relationships. However, no differences exist in relation to the amount of stress experienced as a consequence of caregiving responsibilities. Occupational health nurses have an ideal opportunity to help employed caregivers cope with their caregiving responsibilities both at the worksite and in their personal lives.     

Cybersupport: empowering asthma caregivers

In the United States, an estimated 6.5 million children have asthma (Akinbami, 2005). Due to the chronic and unpredictable nature of asthma, the condition places excessive demands on the primary caregiver. The complexity of asthma management has required parents to take increased responsibility for the assessment and treatment of their child's asthma (Dickinson & Dignam, 2002). Many families are turning to the Internet for information and support. The purpose of this study was to gain insight into the "lived" experiences of an online asthma caregivers support group. Archived messages posted to an online discussion list were analyzed using phenomenological thematic analysis. Five themes emerged providing insight into the meaning of caregiving and the provision of social support. Online support narratives provide a unique way to gain insight and understanding of the experiences of mother's enacting the caregiver role. Understanding the everyday lives of asthma caregivers can help nurses and other health care providers better meet caregiver needs.     

Health care transitions for adolescents with congenital heart disease: patient and family perspectives

Advances in medical management and surgical treatment have improved the longevity and quality of life for patients with CHD. However, meeting the health care needs of this growing population has not kept pace with the advances in technology. Adolescents with CHD are caught between both childhood and adulthood and pediatric and adult cardiology. As health care providers develop strategies to meet the special health care transition needs of this group, patient and family perspectives must be understood and included in the transition plan if one is to develop meaningful interventions. Assessment and recognition of the developmental changes occurring for both adolescents and their families and the impact of chronic illness on these changes are critical if transition is to be successful. Expectations,individual biases, and negative stereotypes need to be recognized and reframed if one is to establish an empathetic, positive, and trusting relationship with patients and their families. Greater sensitivity also needs to be given to the shifting roles, responsibilities, and inherent losses that occur with transition. Nurses have a key role in guiding patients and families toward adult, independent self-care by helping them identify and use their talents and resources as they move toward achieving their goals and dreams for the future.     

Gaining control: Family members relate to persons with severe mental illness

Decades of empirical research regarding families of persons with serious mental illnesses has documented the stress and burden associated with the caregiving role. Recent changes in health care delivery have increased responsibilities of family caregivers without appreciably alleviating their stress. The complexities of the caregiving role need to be investigated if effective interventions are to be realized. To date, a critical but understudied area of investigation is the meaning of this experience for family caregivers and how that meaning affects their responses to the caregiving role. The purpose of this interpretive study was to increase understanding of the meaning of caregiving that caregivers derived from ongoing interactions with the ill relative. In-depth interviews were conducted with 15 family caregivers of psychiatric inpatients. Thematic analysis of the textual data revealed that the meaning of caregiving was constituted by the following concerns: finding the essence of the person obscured by the illness, finding a place for self in influencing the illness, and helping the relative to move forward. © 1998 John Wiley & Sons, Inc. Res Nurs Health 21: 363–373, 1998     

Accommodating the stranger en casa: how Mexican American elders and caregivers decide to use formal care

Mexican American elders have higher levels of functional impairment and chronic illness, yet they use formal home care services less than do non-Hispanic White elders. This article describes the processes by which Mexican American elders and their caregivers decide to use home care services. Interviews were conducted with Mexican American elders (n = 11) and family caregivers (n = 12) for a sample of 23 individuals. The emerging substantive grounded theory included three stages that described the process of deciding to use home care services: Taking Care of our Own, Acknowledging Options, and Becoming Empowered. The processes describe how Mexican American families eventually accept home care services while maintaining their cultural norm of taking care of elders. The theory gives voice to both elders and caregivers in this process, adds to extant knowledge, and shapes interventions to support traditional Mexican American family values such as elders' staying at home as long as possible. The theory meets nursing's goals of reducing health care disparities by improving or sustaining elders' health and functional ability, decreasing the caregiving burden, and reducing health care costs.     

Gerontological advance practice nurses: as end-of-life care facilitators

Gerontological advance practice nurses (GAPNs) are ideal providers to assist elderly patients with advanced chronic illness and their families as they experience the final phase of life. The goal of this individualized process is for the patient to experience a "good death"-one that is comfortable and self-determined. This article proposes a model in which the GAPN offers 5 essential services in caring for the patient and family based on their needs and on the principles of end-of-life (EOL) care: 1) assessment of the living situation; 2) symptom management and enhancement of quality of life; 3) advance care planning (ACP); 4) patient and family counseling (emotional, social, spiritual); and 5) continuity, communication, and coordination of care.     

Children's adaptation to insulin dependent diabetes mellitus: a critical review of the literature

A preventive health care context is important in managing children with insulin dependent diabetes mellitus (IDDM). Specific risk factors can make adaptation to IDDM more difficult. These include older age, female gender, family stress, and non-intact family structure. Factors which enhance child adaptation, also called resistance factors, include family cohesion and adaptability, positive coping strategies, younger age, and social support. Children having a chronic illness face many challenges, including changes in lifestyle, such as regimented scheduling of everyday life, readjustment of roles in the family, and potential activity alterations. An important role of health care professionals is to guide and counsel both children who are newly diagnosed with a chronic illness and their families about ways to normalize their lives as much as possible, even while realizing that their lives will never be the same as before diagnosis. Throughout the course of an illness, children and families rely on nurses to provide information about health promotion and illness management. Nurses coordinating the care of children adapting to insulin dependent diabetes mellitus (IDDM) must recognize the significance the diagnosis has on the child. Furthermore, identification of those factors that place the child at risk for poor adaptation is critical so that the nurse can assist with the process of adaptation and recruit other psychological or social support resources as early as possible.