Caregiver Research: Children with Disabilities

Achieving family and provider partnerships for children with special health care needs.

Denboba D, McPherson MG, Kenney MK, Strickland B, Newacheck PW.  Division of Services for Children with Special Health Care Needs, Maternal and Child Health Bureau, Health Resources and Services Administration, Parklawn Building, 5600 Fishers La, Room 18A-18 Rockville, MD 20857, USA. Pediatrics. 2006 Oct;118(4):1607-15.

BACKGROUND: During the past 2 decades, family-centered care has evolved as the standard of care for children with special health care needs. A major principle of family-centered care is a strong partnership between the family and provider, working together to address issues and barriers to accessing comprehensive care and related services. The federal Maternal and Child Health Bureau defines a positive family-provider partnership as a core program outcome. Our objective was to assess the extent to which families of children with special health care needs feel as though they are treated as partners in decision-making by their doctors.


METHODS: We analyzed the 2001 National Survey of Children With Special Health Care Needs, a nationally representative telephone survey of caretakers for 38,866 children with special health care needs. Bivariate and multivariate statistical methods were used to assess the frequency of meeting the partnership core outcome, as well as the demographic and socioeconomic predictors of meeting core outcome. We also examined the effect of partnership on indicators of access and well-being for children with special health care needs.


RESULTS: Among children with special health care needs, 85.8% of families reported usually or always feeling like a partner in their child’s care. However, living in poverty, minority racial and ethnic status, absence of health insurance, and depressed functional ability placed children with special health care needs and their families at elevated risk of being without a sense of partnership. We found that sense of partnership was associated with improved outcomes across a number of important health care measures, including missed school days, access to specialty care, satisfaction with care, and unmet needs for child and family services.


CONCLUSIONS: Results of the survey demonstrated that whereas most families of children with special health care needs feel they are partners in the care of their child, further work is needed, particularly for poor, uninsured, and minority children, as well as those with functional limitations. The survey results also demonstrate the importance of partnership; children whose care met the partnership core outcome experienced improved access to care and well-being.


Caregiving stress, immune function, and health: implications for research with parents of medically fragile children.

Merkle CJ, Kuster PA. The University of Arizona, College of Nursing and Southern Arizona Veterans Administration Health Care System, Tucson, Arizona 85737, USA. Issues Compr Pediatr Nurs. 2004 Oct-Dec;27(4):257-76.


Caregiving stress has been associated with considerable demands imposed on parents responsible for the physical and emotional care of medically fragile children. With health care advances in medicine and technology, there are a growing number of children with chronic conditions and disabilities (i.e., the medically fragile) surviving longer and being cared for almost exclusively in the home by parents. The physical strains, financial constraints, emotional effects, and social isolation experienced by parents caring for children with such complex medical needs may ultimately impact their physical and emotional health. Stress associated with the caregiving of older adults has been shown to negatively impact on health and immune functioning with the potential for associated morbidity. Studies exploring the relationship of stress with biological markers of immune functioning in parents have not been widely conducted. Therefore, there is a great opportunity in parent-child health for researchers to investigate implications of stress on immune functioning and health outcomes in parents caring for medically fragile children at home. The purpose of this review article will be to provide an overview of the literature related to caregiving stress and immune functioning and to discuss implications for research in this area with parents of medically fragile children.


Dilemmas in sharing care: maternal provision of professionally driven therapy for children with disabilities.

Leiter V.  Brandeis University, PO Box 9110, MS035, Waltham, MA 02454-9110, USA.  Soc Sci Med. 2004 Feb;58(4):837-49.


This paper explores some of the dilemmas that result when mothers and professionals collaborate in providing care to young children with disabilities within a US public program called Early Intervention. Successful collaboration between professionals and activist parents resulted in the program having a “family centered” approach, but the implementation of that approach is problematic. Professionals transmit therapeutic knowledge and skills to mothers of young children with special needs, urging them to perform therapeutic care work with their children. Through these efforts, professionals create a “therapeutic imperative” for mothers, expecting them to do therapeutic work that usually exceeds the amount of work that professionals do with their children. This paper explores the dilemmas mothers and professionals face when implementing family centered care and the ways in which mothers and professionals negotiate contested understandings of the optimal mixture of public (professional) and private (maternal) provision of therapeutic care to young children with disabilities.


Empowerment in parents of school-aged children with and without developmental disabilities.

Nachshen JS, Minnes P. Queen’s University, Department of Psychology, Kingston, Ontario, Canada.  J Intellect Disabil Res. 2005 Dec;49(Pt 12):889-904.

BACKGROUND: Despite the widespread use of the term ’empowerment’ in clinical literature to describe both a desirable process and the outcome of service delivery, the term remains more of a theoretical than practical construct. This study examined the factors that contribute to empowerment in parents of school-aged children with and without developmental disabilities (DD) using the Double ABCX model of family adaptation contrasted with the linear ACBX model.


METHODS: Parents of children with (n = 100, 97% mothers) and without (n = 100, 98% mothers) DD completed questionnaires relating to child behaviour problems, parent stress and well-being, and formal and informal support. Structural equation modelling was used.


RESULTS: Parents of children with DD reported more child behaviour problems, more stress, less well-being and more social support than parents of children without DD. Structural equation modelling supported the ACBX model for both groups. A linear relationship was found in which parent well-being and resources mediated the relationship between the stressor (child behaviour problems) and the outcome (empowerment).


CONCLUSIONS: The results of the current study support Hastings and Taunt’s assertion in 2002, in that empowerment was adequately explained using a traditional model of family functioning. The significant prediction offered by the parent’s resources points to the need to deliver services in a manner that is more family-centred. In the education system, this means providing parents with clear messages regarding the schools goals, clarifying the parent’s rights and responsibilities, including the parent in planning and decision making, respecting their knowledge as caregivers and supporting their hopes for their child.


The health of caregivers for children with disabilities: caregiver perspectives.

Murphy NA, Christian B, Caplin DA, Young PC.  University of Utah, Department of Pediatrics, Salt Lake City, UT, USA.  Child Care Health Dev. 2007 Mar;33(2):180-7


BACKGROUND:  There are an estimated 5.9 million children with severe disabilities in the USA, and most of them are cared for at home by their parents and families. Indirect evidence suggests that poor caregiver health may contribute to recurrent hospitalizations and out-of-home placements for children with chronic conditions and disabilities. Greater knowledge of caregiver health-related needs would allow for the improvement of existing services and the development of new strategies to sustain caregivers in their vital roles. This study explores caregiver perspectives of the health implications of long-term informal caregiving for children with disabilities.


METHODS: Forty parents/caregivers of children with disabilities residing in urban, suburban and rural regions of Utah completed questionnaires and participated in focus groups that explored their feelings regarding their current physical and emotional health and the factors that they viewed as either impairing or promoting their health. The sessions were audiotaped and transcribed. Summary statistics were generated for the questionnaire responses. Focus group content was analysed according to emerging themes and patterns in clusters of information.


RESULTS: The caregiving experience was captured by five themes: (i) stress of caregiving; (ii) negative impact on caregiver health; (iii) sharing the burden; (iv) worry about the future; and (v) caregiver coping strategies. Forty-one per cent of the caregivers reported that their health had worsened over the past year, and attributed these changes to a lack of time, a lack of control and decreased psychosocial energy.


CONCLUSIONS: Caregivers of children with disabilities describe negative physical, emotional and functional health consequences of long-term, informal caregiving. They have important insights regarding those aspects of caregiving that have positive and negative influences on their health. Interventions that address these issues may have the potential to positively impact caregiver health.

Helping families raise children with special health care needs at home.

Johnson CP, Kastner TA, American Academy of Pediatrics Committee/Section on Children With Disabilities.  Pediatrics. 2005 Feb;115(2):507-11.

One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6-7). Congregate care, in this regard, is defined as any setting in which 4 or more persons with disabilities reside, regardless of whether the residence is located in the community, such as a school, group home, nursing facility, or institution. Although this particular public health objective may reflect an unfamiliar concept for some pediatricians, the American Academy of Pediatrics supports the goals and objectives of Healthy People 2010 as well as the medical home and the provision of community-based, culturally effective, coordinated, and comprehensive care for children with special health care needs and their families. To advise families caring for children with special health care needs effectively, the pediatrician should be familiar with the principles of permanency planning and well informed of local family-support services. The pediatrician should also work with the family to identify the range of long-term supports and services available for their child. These supports may include respite for biological families as well as various additional parenting models such as shared parenting, foster care, alternate parents, and adoption. Although family-based supports are preferable, families may consider other out-of-home placements including group homes, placement in a nursing facility, or other forms of institutional care when sufficient family-based services are not available. Once all the options are understood, issues regarding quality of care can be individualized and judged by the parent or guardian, in close collaboration with the pediatrician and other professionals with expertise in permanency planning and long-term supports and services. The purpose of this clinical report is to educate physicians on the philosophy of providing a permanent family environment (permanency planning) for all children, including those with special health care needs, and the importance of adequate and accessible community services to support and maintain the well-being of all family members.


Low back pain in adult female caregivers of children with physical disabilities.

Tong HC, Haig AJ, Nelson VS, Yamakawa KS, Kandala G, Shin KY.  Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI 48108, USA.  Arch Pediatr Adolesc Med. 2003 Nov;157(11):1128-33.


BACKGROUND: Low back pain (LBP) in occupational settings has been studied extensively. There are fewer studies on LBP in domestic settings, especially in an informal caregiving setting.


OBJECTIVES: To compare the prevalence of LBP in adult female primary caregivers of children with physical disabilities who need assistance with transfers (eg, moving from a bed to a wheelchair) with the prevalence of LBP in adult female primary caregivers of children with nondisabling medical illnesses and to evaluate the factors associated with LBP.


DESIGN: A 15-minute, self-administered, cross-sectional survey.


SETTING: University-based clinics.Subjects Ninety consecutive adult female caregivers of children presenting to a pediatric physical medicine and rehabilitation clinic and 23 consecutive adult female caregivers of children presenting to a pediatric endocrine clinic were studied. General exclusionary criteria included the following: male sex, a history of back surgery or fracture, the caregiver was younger than 18 years old at the time of the completion of the questionnaire, or the caregiver was caring for any child younger than 2 years old. Caregivers visiting the pediatric endocrine clinic were excluded if they were caring for 1 or more children needing assistance with transfers.


MAIN OUTCOME MEASURES: The dependent variable was the presence of LBP. The independent variables were mood, work status, amount of lifting at work, physical functioning of the child, demographic variables of the caregiver, and demographic variables of the child.


RESULTS: The prevalence of having LBP (71.1%) in the physical medicine and rehabilitation group is higher than the prevalence (43.5%) in the endocrine clinic group (odds ratio, 3.2; 95% confidence interval, 1.25-8.21). The prevalence of having LBP (80.3%) when the child required physical assistance with transfers was significantly higher than the prevalence (40.5%) when the child did not require physical assistance with transfers (odds ratio, 2.56; 95% confidence interval, 2.56-14.0). Forward multiple logistic regression showed that the factors related to LBP in the caregiver were the transferability of the child, mood of the caregiver, and a history of LBP in the caregiver.


CONCLUSIONS: The prevalence of LBP is higher in caregivers of children needing assistance with transfers. This increased prevalence is associated with the transferability of the child and mood of the caregiver. Results of this study suggest that physical and psychological factors both contribute to the presence of nonoccupational LBP.


Spiritual experiences of parents and caregivers who have children with disabilities or special needs.

Speraw S.  The University of Tennessee College of Nursing, Knoxville, Tennessee 37996-4180, USA.  Issues Ment Health Nurs. 2006 Feb-Mar;27(2):213-30.

Despite the fact that faith has been described as a universal concern, and despite the realization that the presence of social supports is an essential element in successful coping, there has been no systematic examination of the quality of spiritual networks important to families impacted by childhood disability. There is also little understanding of how spirituality in children influences the lived experience of faith in the adults who care for them. Findings reported here come out of a larger existential phenomenology study that examined the lived experience of parents or caregivers who sought to obtain formal religious education for their children with special needs. Participants included 26 parents/caregivers representing 44 children with special needs and 15 different faith traditions. Narratives indicated that many clergy and members of faith communities either devalue or fail to recognize the spiritual lives of disabled children. This lack of recognition was associated with participant disillusionment or crises of faith and a sense of alienation from potential sources of emotional support. In contrast, those participants whose children were welcomed reported feeling sustaining support and strengthened faith. No parent or caregiver perceived nurses as having an awareness of or interest in spirituality within families of children who have special needs.


Stress and compliance with a home exercise program among caregivers of children with disabilities.

Rone-Adams SA, Stern DF, Walker V.  Program in Physical Therapy, Nova Southeastern University, Ft. Lauderdale, Florida.  Pediatr Phys Ther. 2004 Fall;16(3):140-8.


PURPOSE: To determine the relationship between caregiver stress and compliance with home programs in caregivers of children with disabilities.


METHODS: Sixty-six caregivers of children with disabilities responded to a mailed survey to determine their level of compliance with a prescribed home physical therapy program and the level of caregiver stress. Compliance was defined as the degree to which caregivers followed the prescribed frequency of the home program.


RESULTS: Sixty-six percent of the caregivers reported some level of noncompliance with their home program. Linear regression analysis revealed a significant relationship between the caregivers’ level of noncompliance with the home program and the level of stress that they reported. Correlation coefficients showed a significant relationship between family problems and noncompliance with home programs. As caregiver and family problems increased, noncompliance with home programs increased.


CONCLUSIONS: Caregivers of children with disabilities experience stress that should be addressed by therapists to maximize compliance with home programs.


“This is a Spiritual Experience”: perspectives of Latter-Day Saint families living with a child with disabilities.

Marshall ES, Olsen SF, Mandleco BL, Dyches TT, Allred KW, Sansom N.  College of Nursing, Brigham Young University, Provo, Utah, USA.  Qual Health Res. 2003 Jan;13(1):57-76.

The presence of a child with disabilities elicits a variety of stress demands on the family. Religion is recognized as a powerful personal, family, and cultural variable. However, little is known about the influence of religion in dealing with disability among families within particular religious groups. This descriptive study explored themes of spiritual belief and religious support among families of the Church of Jesus Christ of Latter-Day Saints (LDS, or Mormon) with a child with developmental disabilities. Parents shared perspectives of meaning that emerged from experiences with religion and family beliefs perceived to be unique. The core theme, “This is a Spiritual Experience,” provides the foundation for a descriptive model that depicts aspects of finding meaning and perceived transcendence.