Children's experiences of cystic fibrosis: a systematic review of qualitative studies
adolescent; Child; Humans; Young Adult; Prognosis; Health Services Needs and Demand; social support; Qualitative Research; Social Isolation; Sick Role; Social Adjustment; Cystic Fibrosis; Activities of Daily Living; Self Care; Cost of Illness; Internal-External Control; Defense Mechanisms; Disability Evaluation; Hope; Power (Psychology); quality of life; Preschool; Adaptation; Psychological; Resilience
BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children and adolescents with CF to direct care toward areas that patients regard as important. METHODS: MEDLINE, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature were searched from inception to April 2013. We used thematic synthesis to analyze the findings. RESULTS: Forty-three articles involving 729 participants aged from 4 to 21 years across 10 countries were included. We identified 6 themes: gaining resilience (accelerated maturity and taking responsibility, acceptance of prognosis, regaining control, redefining normality, social support), lifestyle restriction (limited independence, social isolation, falling behind, physical incapacity), resentment of chronic treatment (disempowerment in health management, unrelenting and exhausting therapy, inescapable illness), temporal limitations (taking risks, setting achievable goals, valuing time), emotional vulnerability (being a burden, heightened self-consciousness, financial strain, losing ground, overwhelmed by transition), and transplant expectations and uncertainty (confirmation of disease severity, consequential timeliness, hope and optimism). CONCLUSIONS: Adolescents and children with CF report a sense of vulnerability, loss of independence and opportunities, isolation, and disempowerment. This reinforces the importance of the current model of multidisciplinary patient-centered care that promotes shared decision-making, control and self-efficacy in treatment management, educational and vocational opportunities, and physical and social functioning, which can lead to optimal treatment, health, and quality of life outcomes.
2014-06
Jamieson N; Fitzgerald D; Singh-Grewal D; Hanson CS; Craig JC; Tong A
Pediatrics
2014
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Journal Article
<a href="http://doi.org/10.1542/peds.2014-0009" target="_blank" rel="noreferrer">10.1542/peds.2014-0009</a>
Adjustment to chronic pain: the role of pain acceptance, coping strategies, and pain-related cognitions
Female; Humans; Male; Pain; Adult; Chronic disease; Aged; Middle Aged; Culture; Sick Role; Sex Factors; Activities of Daily Living; Depression; Internal-External Control; Psychometrics; Personality Inventory; Anxiety; Behavior Therapy; Adaptation; Psychological; Models; Statistical; Helplessness; Learned; Software; Mathematical Computing
BACKGROUND: Previous research has found that acceptance of pain is more successful than coping variables in predicting adjustment to pain. PURPOSE: To compare the influence of acceptance, pain-related cognitions and coping in adjustment to chronic pain. METHODS: One hundred seventeen chronic pain patients attending the Clinical Pain Unit were administered a battery of questionnaires assessing pain acceptance, active and passive coping, pain-related cognitions, and adjustment. RESULTS: The influence of acceptance, coping, and cognition on all the adjustment variables was considered simultaneously via Structural Equation Modeling using LISREL 8.30 software. A multigroup analysis showed that the male and female samples did not significantly differ regarding path coefficients. The final model showed that acceptance of pain determined functional status and functional impairment. However, coping measures had a significant influence on measures of emotional distress. Catastrophizing self-statements significantly influenced reported pain intensity and anxiety; resourcefulness beliefs had a negative and significant influence on depression. CONCLUSIONS: These findings suggest that acceptance may play a critical role in the maintenance of functioning and, with this aim, acceptance-based treatments are promising to avoid the development of disability. They also lend support to the role of control beliefs and of active coping to maintain a positive mood. Acceptance and coping are presented as complementary approaches.
2007-04
Esteve R; Ramírez-Maestre C; López-Marínez AE
Annals Of Behavioral Medicine: A Publication Of The Society Of Behavioral Medicine
2007
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Journal Article
<a href="http://doi.org/10.1080/08836610701309724" target="_blank" rel="noreferrer">10.1080/08836610701309724</a>
Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.
Child; Female; Humans; Male; Euthanasia; Netherlands; Truth Disclosure; Sick Role; Right to Die; adolescent; Psychological; DNAR; Attitude to Death; Suicide; Assisted/px [Psychology]; Interview; decision making; Advance Directives; Passive; Palliative Care/px [Psychology]; Terminal Care/px [Psychology]; Neoplasms/px [Psychology]; Minors/px [Psychology]; Survivors/px [Psychology]; Euthanasia/px [Psychology]; Informed Consent/px [Psychology]
OBJECTIVES: The present study aimed to investigate the attitudes of adolescent cancer survivors toward end-of-life decisions with life-shortening effects, including nontreatment decisions (NTDs), intensified alleviation of pain and symptoms (APS), and euthanasia, and the influence of illness experience on these attitudes., METHODS: Adolescent cancer survivors were interviewed with a structured questionnaire using hypothetical case descriptions. The results were compared with a study of 1769 adolescents without experience of chronic illness., RESULTS: Eighty-three adolescents, 11 to 18 years of age, were interviewed. In terminal situations, 70% to 90% found requests for NTDs acceptable, 84% requests for APS, and 57% to 64% requests for euthanasia. Requests for end-of-life decisions were less acceptable in nonterminal situations, where 28% found requests for NTDs acceptable, 39% to 47% requests for APS, and 11% to 21% requests for euthanasia. Frequently cited reasons for holding back physicians from administering a lethal drug to a child were the child not being well informed about his or her condition (92%) and the parents' opinion not being asked (92%). Compared with adolescents without experience with chronic illness, cancer survivors were more accepting toward requests for NTDs and APS in terminal situations., CONCLUSIONS: Adolescent cancer survivors, like other adolescents, want to be involved in medical decision-making at the end of life. They value autonomous decision-making, without excluding parents from the process. The experience of living through a life-threatening illness can alter adolescents' attitudes toward requests for NTDs and APS.
2009
Pousset G; Bilsen J; De Wilde J; Benoit Y; Verlooy J; Bomans A; Deliens L; Mortier F
Pediatrics
2009
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Journal Article
<a href="http://doi.org/10.1542/peds.2009-0621" target="_blank" rel="noreferrer">10.1542/peds.2009-0621</a>
Depression and anxiety in rheumatoid arthritis: the role of perceived social support
Female; Humans; Male; Middle Aged; social support; Anxiety Disorders; Sick Role; Depressive Disorder; Ireland; Arthritis; Social Perception; Rheumatoid; Social Support and Chronic Pain
BACKGROUND: Rheumatoid arthritis is a common, disabling, autoimmune disease with significant psychiatric sequelae. AIMS: We aimed to identify the prevalence of depression and anxiety in patients with rheumatoid arthritis attending hospitals, and to elucidate the role played by illness variables, disability variables and psychosocial variables in predicting levels of depression and anxiety. METHODS: We assessed depression, anxiety, arthritis-related pain, arthritis-related disability and perceived social support in 68 adults with rheumatoid arthritis. RESULTS: Sixty-five per cent of patients had evidence of depression (37.5% moderate or severe) and 44.4% had evidence of anxiety (17.8% moderate or severe). Both depression and anxiety were highly correlated with several measures of arthritis-related pain and functional impairment. After controlling for age, gender, marital status and duration of arthritis, perceived social support was a highly significant independent predictor of both depression and anxiety. CONCLUSIONS: These findings suggest that increasing social support may be particularly important in the management of depression and anxiety in rheumatoid arthritis.
2006-06
Zyrianova Y; Kelly BD; Gallagher C; McCarthy C; Molloy MG; Sheehan J; Dinan TG
Irish Journal Of Medical Science
2006
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Journal Article
<a href="http://doi.org/10.1007/bf03167946" target="_blank" rel="noreferrer">10.1007/bf03167946</a>
Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis
Child; Female; Humans; Male; Prospective Studies; Self Concept; Longitudinal Studies; Sick Role; Social Adjustment; Conflict (Psychology); Motivation; Body Image; Stress; adolescent; Adaptation; Psychological; Models; Family/psychology; Statistical; Adolescent Transitions; Parents/psychology; Psychological/complications; Social Behavior; Educational Status; Individuation; Intelligence; Spinal Dysraphism/psychology
OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This prospective longitudinal study includes 68 families of children with spina bifida and 68 comparison families of healthy children. Multimethod, multiinformant data were evaluated via optimal data analysis (ODA) and classification tree analysis (CTA) techniques. RESULTS: Factors best predicting psychosocial adaptation in early adolescence included (a) intrinsic motivation, (b) estimated verbal IQ, (c) behavioral conduct, (d) coping style, and (e) physical appearance. There were no significant group (spina bifida vs. able-bodied) effects. CONCLUSIONS: The final classification model correctly classified 77.8% of the total sample, indicating that this model had significant predictive capabilities. Results suggested that processes leading to psychosocial adaptation may be similar for youth with and without chronic illness.
2006
Coakley RM; Holmbeck GN; Bryant FB
Journal of Pediatric Psychology
2006
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj032" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj032</a>
Siblings of pediatric cancer patients: the quantitative and qualitative nature of quality of life
adolescent; Child; Female; Humans; Male; bereavement; Neoplasms; Siblings; Sick Role; Sibling Relations; Personality Inventory; Self-Help Groups; quality of life; Adaptation; Psychological; sibling bereavement; Camping; Personality Assessment
This study used both quantitative and qualitative methodologies to assess the pediatric health-related quality of life (HRQOL) in siblings (n = 77) of cancer patients attending summer camp. On quantitative measures (Pediatric Quality of Life Inventory (PedsQL) parent and child versions), siblings reported statistically significant improvements in HRQOL from pre-to post camp. The parent sample, as a whole, did not report a statistically significant improvement in the siblings' HRQOL; however, statistically significant improvements were found when the analysis controlled for the responses of bereaved parents. On the qualitative measures (Sibling Qualitative Interview and Camp Okizu Satisfaction Surveys), both children and parents described the positive impact of camp. Using grounded theory, we identified the major themes and found that the positive emotional and social experiences captured by the quotes were paralleled in the quantitative findings of improved HRQOL in psychosocial domains on the PedsQL. These findings suggest the beneficial effects of camp as a psychological intervention and illustrate the value of integrating quantitative and qualitative methodological approaches in research.
2005
Packman W; Greenhalgh J; Chesterman B; Shaffer T; Fine J; Van Zutphen K; Golan R; Amylon Michael D
Journal Of Psychosocial Oncology
2005
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Journal Article
<a href="http://doi.org/10.1300/J077v23n01_06" target="_blank" rel="noreferrer">10.1300/J077v23n01_06</a>
Chronic illness in adolescents
Humans; Sick Role; Australia; Adolescent Behavior; adolescent; Adolescent Transitions; Chronic disease
2003
Sawyer MG; Couper JJ; Martin AJ; Kennedy JD
The Medical Journal Of Australia
2003
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Journal Article
<a href="http://doi.org/10.1016/s0031-3955(16)33077-2" target="_blank" rel="noreferrer">10.1016/s0031-3955(16)33077-2</a>
Human suffering: the need for relationship-based research in pediatric end-of-life care
Child; Humans; Interpersonal Relations; Health Services Needs and Demand; Child Psychology; Sick Role; Spirituality; Stress; quality of life; Adaptation; Psychological; social support; Neoplasms/complications; Nursing Research/organization & administration; Oncologic Nursing/organization & administration; Terminal Care/organization & administration/psychology; Pediatric Nursing/organization & administration; Psychological/etiology/nursing/psychology
Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand the multiple dimensions of the person who suffers and the complex set of relationships within the natural and the clinical social networks. Pediatric oncology research must include appropriately designed studies with sound methodology and measurement strategies to test and refine theories that account for the link between human relationships and the relief of suffering. Studies should assess as many theoretical models as possible, including the social network, perceptions of support, and provider-recipient interactions; their physical, emotional, behavioral, and spiritual concomitants; and their impact on medical decision making and health outcomes. Future directions in pediatric end-of-life care research must also include evaluating social and spiritual interventions developed on the basis of solid hypotheses regarding the positive and negative influences of interpersonal dynamics on the processes that mediate between suffering and well-being.
2004
Kane JR; Hellsten MB; Coldsmith A
Journal Of Pediatric Oncology Nursing
2004
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Journal Article
<a href="http://doi.org/10.1177/1043454204264393" target="_blank" rel="noreferrer">10.1177/1043454204264393</a>
The nature of suffering and the goals of medicine
Humans; Emotions; Sick Role; Holistic Health; Philosophy; Medical; Therapeutics; Disease; Research Support; U.S. Gov't; Philosophy; Pain/psychology; Non-P.H.S.; Patients/psychology
The question of suffering and its relation to organic illness has rarely been addressed in the medical literature. This article offers a description of the nature and causes of suffering in patients undergoing medical treatment. A distinction based on clinical observations is made between suffering and physical distress. Suffering is experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity. Suffering can include physical pain but is by no means limited to it. The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians' failure to understand the nature of suffering can result in medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.
1982
Cassel EJ
The New England Journal Of Medicine
1982
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Journal Article
<a href="http://doi.org/10.1056/nejm198203183061104" target="_blank" rel="noreferrer">10.1056/nejm198203183061104</a>
Uncertainty in illness
Humans; Sick Role; Cognition; Professional-Patient Relations; Adaptation; Psychological; Models; social support; Educational Status; Disease/psychology; Mental Processes
1988
Mishel MH
Image--the Journal Of Nursing Scholarship
1988
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Journal Article
<a href="http://doi.org/10.1111/j.1547-5069.1988.tb00082.x" target="_blank" rel="noreferrer">10.1111/j.1547-5069.1988.tb00082.x</a>
Psychosexual development in adolescents with chronic medical illnesses
Child; Female; Humans; Male; Sick Role; adolescent; Adaptation; Psychological; Adolescent Transitions; Chronic Disease/psychology; Psychosexual Development
The author provides a literature review and developmental formulation, with the goal to assist clinicians working with medically ill adolescents with psychosexual issues. MEDLINE and PsychINFO database searches of English-language medical journal articles published between 1986 and 1997 for articles related to medical illness and psychosexual development in adolescence were done. The author found that little systematic research on the psychosexual implications of medical illnesses for adolescents has been undertaken, but existing studies suggest that psychosexual development is negatively affected by medical illness. A three-phase model of adolescent psychosexual development is presented, with specific psychosexual tasks associated with each phase. Impediments to progressing through adolescent psychosexual phases due to medical conditions are identified, and case examples are provided. The author concludes that clinicians working with adolescents with medical conditions should attend to the possibility of psychosexual impediments in these adolescents and use developmentally appropriate methods for assessing and treating these difficulties when they arise.
1998
Lock J
Psychosomatics
1998
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Journal Article
<a href="http://doi.org/10.1016/s0033-3182(98)71322-2" target="_blank" rel="noreferrer">10.1016/s0033-3182(98)71322-2</a>
Chronic disease and perceived developmental progression in adolescence
Female; Humans; Male; Peer Group; Sick Role; Social Adjustment; Body Image; adolescent; Adaptation; Psychological; Adolescent Transitions; Activities of Daily Living/psychology; Personality Development; Diabetes Mellitus; Life Style; Type 1/psychology
This study examined whether chronic illness causes delays in adolescents' perceived developmental status. Longitudinal data were obtained from 86 adolescents afflicted with insulin-dependent diabetes mellitus and 103 healthy adolescents. The adolescents annually completed a questionnaire pertaining to their current developmental status and their desired future developmental status in 11 age-specific developmental tasks. Health status and physical maturity were also determined. In the first year of the study, the diabetics reported delays compared with their healthy peers in some developmental tasks, particularly physical maturity and an independent lifestyle. However, the overall developmental progression perceived by chronically ill adolescents was impressive. The difficulty of balancing normative development with the demands of chronic illness is discussed.
1998
Seiffge-Krenke I
Developmental Psychology
1998
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Journal Article
<a href="http://doi.org/10.1037//0012-1649.34.5.1073" target="_blank" rel="noreferrer">10.1037//0012-1649.34.5.1073</a>
Control beliefs, coping efforts, and adjustment to chronic pain
Female; Humans; Male; Pain; Pain Measurement; Chronic disease; Middle Aged; Sick Role; Internal-External Control; Adaptation; Psychological
This study examined factors hypothesized to influence adaptation to chronic pain in 118 patients who were interviewed to gauge adjustment (psychological functioning, medical services utilization, and activity level) and several widely discussed predictors of adjustment. Control appraisals and the practice of ignoring pain, using coping self-statements, and increasing activities were positively related to psychological functioning. Control appraisals and the practice of diverting attention, ignoring pain, and using coping self-statements also yielded a positive relation to activity level, but only for those patients reporting relatively low levels of pain severity. None of the predictors were related to medical services utilization. Future research is needed to replicate these findings and help clarify when appraisals and coping strategies are most productive among patients with chronic pain.
1991-06
Jensen MP; Karoly P
Journal Of Consulting And Clinical Psychology
1991
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Journal Article
<a href="http://doi.org/10.1037//0022-006x.59.3.431" target="_blank" rel="noreferrer">10.1037//0022-006x.59.3.431</a>
Postbereavement depressive mood and its prebereavement predictors in HIV+ and HIV- gay men
Humans; Male; Adult; Follow-Up Studies; Middle Aged; Sick Role; Risk Factors; Personality Inventory; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; bereavement; Caregivers/psychology; Acquired Immunodeficiency Syndrome/psychology; Depression/diagnosis/psychology; HIV Seropositivity/psychology; Homosexuality; Male/psychology; San Francisco
Prebereavement predictors of the course of postbereavement depressive mood were examined in 110 gay men who were their partner's caregiver until the partner's death of AIDS. In all, 37 HIV+ and 73 HIV- bereaved caregiving partners were assessed bimonthly throughout a 10-month period beginning 3 months before and ending 7 months after the partner's death. Throughout the 10 months, mean Centers for Epidemiology Scale-Depression (CES-D) scores on depressive mood were above the cutoff for being at risk for major depression. CES-D scores decreased for 63% bereaved caregivers over the 7 postbereavement months, and 37% showed little change from high CES-D scores or increasing CES-D scores. High prebereavement CES-D scores and finding positive meaning in caregiving predicted diminishing depressive mood; HIV+ serostatus, longer relationships, hassles, and use of distancing and self-blame to cope predicted unrelieved depressive mood.
1996
Folkman S; Chesney M; Collette L; Boccellari A; Cooke M
Journal Of Personality And Social Psychology
1996
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Journal Article
<a href="http://doi.org/10.1037//0022-3514.70.2.336" target="_blank" rel="noreferrer">10.1037//0022-3514.70.2.336</a>
Mental and physical health of spouse caregivers: the role of personality
Female; Humans; Male; Aged; Sick Role; Personality Inventory; Stress; Non-U.S. Gov't; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; Caregivers/psychology; Arousal; Psychological/complications; Alzheimer Disease/psychology; Dementia/psychology; Neurotic Disorders/psychology
Although personal resources of caregivers, such as coping skills and social support, have been shown to be important in understanding caregiver stress and health outcomes, personality traits have not previously been considered. The purpose of this study was to examine the association between the personality traits of neuroticism and dispositional optimism and mental and physical health outcomes. It was predicted that personality would have direct effects, and indirect effects through perceived stress, on health outcomes. Participants were spouse caregivers of patients diagnosed with Alzheimer's disease. Results showed that neuroticism and optimism were significantly related to mental and physical health. Furthermore, neuroticism had significant direct effects on all of the health outcomes, and substantial indirect effects, through perceived stress, on mental health outcomes. Optimism showed stronger indirect than direct effects on all health outcomes. These findings demonstrate the importance of including personality of the caregiver in theoretical and empirical models of the caregiving process.
1992
Hooker K; Monahan D; Shifren K; Hutchinson C
Psychology And Aging
1992
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Journal Article
<a href="http://doi.org/10.1037//0882-7974.7.3.367" target="_blank" rel="noreferrer">10.1037//0882-7974.7.3.367</a>
Predictors of burden in spouse caregivers of individuals with Alzheimer's disease
Female; Humans; Male; Follow-Up Studies; Aged; Longitudinal Studies; Sick Role; Personal Satisfaction; P.H.S.; Research Support; U.S. Gov't; Adaptation; Psychological; Anger; Anxiety/psychology; Depression/psychology; Activities of Daily Living/psychology; Alzheimer Disease/psychology/therapy; Hostility; Marriage/psychology; Mental Status Schedule/statistics & numerical data; Personality Assessment/statistics & Psychometrics
This study used the following model of distress: Distress = [Exposure to Stress + Vulnerability]/[Psychological and Social Resources]. The constructs in the model were operationalized as (a) distress in response to caregiver experiences (burden); (b) exposure to stress (care recipient functional impairment in activities of daily living [ADLs]); (c) vulnerability (caregiver health problems, anger, and anxiety); and (d) resources (coping, outlook on life, and social supports). Long-term burden (15-18 months after entry) was predicted by several baseline variables: burden, care recipient ADLs, vulnerability and resource variables, and specific interactions of burden, ADLs, vulnerability, and resource variables. The interactions showed that caregivers with high vulnerability and low resources had higher burden scores than caregivers with other combinations of these variables.
1991
Vitaliano PP; Russo J; Young HM; Teri L; Maiuro RD
Psychology And Aging
1991
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Journal Article
<a href="http://doi.org/10.1037/0882-7974.6.3.392" target="_blank" rel="noreferrer">10.1037/0882-7974.6.3.392</a>
Cornerstone care for families of children with life-threatening illness.
Child; Humans; Grief; Professional-Family Relations; Longitudinal Studies; Sick Role; Continuity of Patient Care; Hospices; Adaptation; Psychological; patient care team; Family/psychology; social support; Terminal Care/psychology; Home Nursing/psychology; Brain Diseases/psychology/therapy; Neuromuscular Diseases/psychology/therapy; Public Assistance
Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often distressing job of obtaining that help. They were asked whether they regarded anyone as their co-ordinating cornerstone carer and which qualities of care they most valued. Over three-quarters identified one or more professionals as their cornerstone carer, the most common being paediatricians, domiciliary paediatric nurses and social workers. Nearly a quarter of the families reported not having a cornerstone carer. The ingredients of care especially valued by the parents are described. Families may be better helped and services more rationally used where a cornerstone carer gives support and helps to co-ordinate care in a way that leaves families still feeling in control of their own lives. The issue is raised as to whether patient need or cost/service limitation will be the primary determinant of the way this care is delivered in Britain.
1991
Woolley H; Stein A; Forrest GC; Baum JD
Developmental Medicine And Child Neurology
1991
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Journal Article
<a href="http://doi.org/10.1111/j.1469-8749.1991.tb05110.x" target="_blank" rel="noreferrer">10.1111/j.1469-8749.1991.tb05110.x</a>
Risk factors in the adjustment of siblings of children with cancer
adolescent; Child; Female; Humans; Male; Parent-Child Relations; Self Concept; social support; Adaptation; Neoplasms/psychology; sibling bereavement; Leukemia/psychology; Personality Assessment; Central Nervous System Neoplasms/psychology; Lymphoma/psychology; Child Behavior Disorders/psychology; Child Behavior Disorders/diagnosis; Psychological; Sibling Relations; Sick Role
The study investigated the psychological adjustment of 99 siblings of children with cancer. At 6 months post-diagnosis, 24 siblings had scores in the borderline or clinical range on parent- and teacher-completed measures of behavioural adjustment and were reported to have shown negative changes in behaviour since diagnosis. The results of logistic regression analysis indicated that problems in adjustment were related to the degree of disruption of family life occasioned by the illness, the resources available to the family to cope with the effects of such disruption on siblings and siblings' perceptions of negative interpersonal effects on their lives.;
1996-07
Sloper P; While D
Journal Of Child Psychology And Psychiatry, And Allied Disciplines
1996
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Journal Article
Human suffering: the need for relationship-based research in pediatric end-of-life care
Interpersonal Relations; Neoplasms/co [complications]; Nursing Research/og [organization & Administration]; Oncology Nursing/og [organization & Administration]; Pediatric Nursing/og [organization & Administration]; Psychology; Stress; Terminal Care; Adaptation; Child; Health Services Needs And Demand; Humans; Psychological; Psychological/et [etiology]; Psychological/nu [nursing]; Psychological/px [psychology]; Quality Of Life; Sick Role; Social Support; Spirituality; Stress; Terminal Care/og [organization & Administration]; Terminal Care/px [psychology]
Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand the multiple dimensions of the person who suffers and the complex set of relationships within the natural and the clinical social networks. Pediatric oncology research must include appropriately designed studies with sound methodology and measurement strategies to test and refine theories that account for the link between human relationships and the relief of suffering. Studies should assess as many theoretical models as possible, including the social network, perceptions of support, and provider-recipient interactions; their physical, emotional, behavioral, and spiritual concomitants; and their impact on medical decision making and health outcomes. Future directions in pediatric end-of-life care research must also include evaluating social and spiritual interventions developed on the basis of solid hypotheses regarding the positive and negative influences of interpersonal dynamics on the processes that mediate between suffering and well-being. [References: 29]
Kane JR; Hellsten MB; Coldsmith A
Journal Of Pediatric Oncology Nursing
2004
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<a href="http://doi.org/10.1177/1043454204264393" target="_blank" rel="noreferrer">10.1177/1043454204264393</a>