Living with long term disease or impairment.
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Qurʾān
القرآن6 shownVerses named for this subject by hand come first. The rest are found by the subject’s own Arabic and English senses and are shown as lexical matches, not as anchors anyone has confirmed.
Qur'ān 48:17English sense: sick | Arabic sense: المريض, مريض
لَّيۡسَ عَلَى ٱلۡأَعۡمَىٰ حَرَجࣱ وَلَا عَلَى ٱلۡأَعۡرَجِ حَرَجࣱ وَلَا عَلَى ٱلۡمَرِيضِ حَرَجࣱۗ وَمَن يُطِعِ ٱللَّهَ وَرَسُولَهُۥ يُدۡخِلۡهُ جَنَّٰتࣲ تَجۡرِي مِن تَحۡتِهَا ٱلۡأَنۡهَٰرُۖ وَمَن يَتَوَلَّ يُعَذِّبۡهُ عَذَابًا أَلِيمࣰ ا
the blind, the lame, and the sick will not be blamed.’ God will admit anyone who obeys Him and His Messenger to Gardens graced with flowing streams; He will painfully punish anyone who turns away
Qur'ān 9:91English sense: sick | Arabic sense: المرض, مرض
لَّيۡسَ عَلَى ٱلضُّعَفَآءِ وَلَا عَلَى ٱلۡمَرۡضَىٰ وَلَا عَلَى ٱلَّذِينَ لَا يَجِدُونَ مَا يُنفِقُونَ حَرَجٌ إِذَا نَصَحُواْ لِلَّهِ وَرَسُولِهِۦۚ مَا عَلَى ٱلۡمُحۡسِنِينَ مِن سَبِيلࣲۚ وَٱللَّهُ غَفُورࣱ رَّحِيمࣱ
but there is no blame attached to the weak, the sick, and those who have no means to spend, provided they are true to God and His Messenger- there is no reason to reproach those who do good: God is most forgiving and merciful
Qur'ān 24:61Arabic sense: المريض, مريض
لَّيۡسَ عَلَى ٱلۡأَعۡمَىٰ حَرَجࣱ وَلَا عَلَى ٱلۡأَعۡرَجِ حَرَجࣱ وَلَا عَلَى ٱلۡمَرِيضِ حَرَجࣱ وَلَا عَلَىٰٓ أَنفُسِكُمۡ أَن تَأۡكُلُواْ مِنۢ بُيُوتِكُمۡ أَوۡ بُيُوتِ ءَابَآئِكُمۡ أَوۡ بُيُوتِ أُمَّهَٰتِكُمۡ أَوۡ بُيُوتِ إِخۡوَٰنِكُمۡ أَوۡ بُيُوتِ أَخَوَٰتِكُمۡ أَوۡ بُيُوتِ أَعۡمَٰمِكُمۡ أَوۡ بُيُوتِ عَمَّٰتِكُمۡ أَوۡ بُيُوتِ أَخۡوَٰلِكُمۡ أَوۡ بُيُوتِ خَٰلَٰتِكُمۡ أَوۡ مَا مَلَكۡتُم مَّفَاتِحَهُۥٓ أَوۡ صَدِيقِكُمۡۚ لَيۡسَ عَلَيۡكُمۡ جُنَاحٌ أَن تَأۡكُلُواْ جَمِيعًا أَوۡ أَشۡتَاتࣰ اۚ فَإِذَا دَخَلۡتُم بُيُوتࣰ ا فَسَلِّمُواْ عَلَىٰٓ أَنفُسِكُمۡ تَحِيَّةࣰ مِّنۡ عِندِ ٱللَّهِ مُبَٰرَكَةࣰ طَيِّبَةࣰۚ كَذَٰلِكَ يُبَيِّنُ ٱللَّهُ لَكُمُ ٱلۡأٓيَٰتِ لَعَلَّكُمۡ تَعۡقِلُونَ
No blame will be attached to the blind, the lame, the sick.Whether you eat in your own houses, or those of your fathers, your mothers, your brothers, your sisters, your paternal uncles, your paternal aunts, your maternal uncles, your maternal aunts, houses you have the keys for, or any of your friends’ houses, you will not be blamed: you will not be blamed whether you eat in company or separately. When you enter any house, greet one another with a greeting of blessing and goodness as enjoined by God. This is how God makes His messages clear to you so that you may understand
Qur'ān 4:102English sense: illness | Arabic sense: مرض
وَإِذَا كُنتَ فِيهِمۡ فَأَقَمۡتَ لَهُمُ ٱلصَّلَوٰةَ فَلۡتَقُمۡ طَآئِفَةࣱ مِّنۡهُم مَّعَكَ وَلۡيَأۡخُذُوٓاْ أَسۡلِحَتَهُمۡۖ فَإِذَا سَجَدُواْ فَلۡيَكُونُواْ مِن وَرَآئِكُمۡ وَلۡتَأۡتِ طَآئِفَةٌ أُخۡرَىٰ لَمۡ يُصَلُّواْ فَلۡيُصَلُّواْ مَعَكَ وَلۡيَأۡخُذُواْ حِذۡرَهُمۡ وَأَسۡلِحَتَهُمۡۗ وَدَّ ٱلَّذِينَ كَفَرُواْ لَوۡ تَغۡفُلُونَ عَنۡ أَسۡلِحَتِكُمۡ وَأَمۡتِعَتِكُمۡ فَيَمِيلُونَ عَلَيۡكُم مَّيۡلَةࣰ وَٰحِدَةࣰۚ وَلَا جُنَاحَ عَلَيۡكُمۡ إِن كَانَ بِكُمۡ أَذࣰ ى مِّن مَّطَرٍ أَوۡ كُنتُم مَّرۡضَىٰٓ أَن تَضَعُوٓاْ أَسۡلِحَتَكُمۡۖ وَخُذُواْ حِذۡرَكُمۡۗ إِنَّ ٱللَّهَ أَعَدَّ لِلۡكَٰفِرِينَ عَذَابࣰ ا مُّهِينࣰ ا
When you [Prophet] are with the believers, leading them in prayer, let a group of them stand up in prayer with you, taking their weapons with them, and when they have finished their prostration, let them take up their positions at the back. Then let the other group, who have not yet prayed, pray with you, also on their guard and armed with their weapons: the disbelievers would dearly like you to be heedless of your weapons and baggage, in order for them to take you in a single assault. You will not be blamed if you lay aside your arms when you are overtaken by heavy rain or illness, but be on your guard. Indeed, God has prepared a humiliating punishment for the disbelievers
Qur'ān 4:43Arabic sense: مرض | English sense: illness
يَٰٓأَيُّهَا ٱلَّذِينَ ءَامَنُواْ لَا تَقۡرَبُواْ ٱلصَّلَوٰةَ وَأَنتُمۡ سُكَٰرَىٰ حَتَّىٰ تَعۡلَمُواْ مَا تَقُولُونَ وَلَا جُنُبًا إِلَّا عَابِرِي سَبِيلٍ حَتَّىٰ تَغۡتَسِلُواْۚ وَإِن كُنتُم مَّرۡضَىٰٓ أَوۡ عَلَىٰ سَفَرٍ أَوۡ جَآءَ أَحَدࣱ مِّنكُم مِّنَ ٱلۡغَآئِطِ أَوۡ لَٰمَسۡتُمُ ٱلنِّسَآءَ فَلَمۡ تَجِدُواْ مَآءࣰ فَتَيَمَّمُواْ صَعِيدࣰ ا طَيِّبࣰ ا فَٱمۡسَحُواْ بِوُجُوهِكُمۡ وَأَيۡدِيكُمۡۗ إِنَّ ٱللَّهَ كَانَ عَفُوًّا غَفُورًا
You who believe, do not come anywhere near the prayer if you are intoxicated, not until you know what you are saying; nor if you are in a state of major ritual impurity- though you may pass through the mosque- not until you have bathed; if you are ill, on a journey, have relieved yourselves, or had intercourse, and cannot find any water, then find some clean sand and wipe your faces and hands with it. God is always ready to pardon and forgive
Qur'ān 5:6Arabic sense: مرض | English sense: sick
يَٰٓأَيُّهَا ٱلَّذِينَ ءَامَنُوٓاْ إِذَا قُمۡتُمۡ إِلَى ٱلصَّلَوٰةِ فَٱغۡسِلُواْ وُجُوهَكُمۡ وَأَيۡدِيَكُمۡ إِلَى ٱلۡمَرَافِقِ وَٱمۡسَحُواْ بِرُءُوسِكُمۡ وَأَرۡجُلَكُمۡ إِلَى ٱلۡكَعۡبَيۡنِۚ وَإِن كُنتُمۡ جُنُبࣰ ا فَٱطَّهَّرُواْۚ وَإِن كُنتُم مَّرۡضَىٰٓ أَوۡ عَلَىٰ سَفَرٍ أَوۡ جَآءَ أَحَدࣱ مِّنكُم مِّنَ ٱلۡغَآئِطِ أَوۡ لَٰمَسۡتُمُ ٱلنِّسَآءَ فَلَمۡ تَجِدُواْ مَآءࣰ فَتَيَمَّمُواْ صَعِيدࣰ ا طَيِّبࣰ ا فَٱمۡسَحُواْ بِوُجُوهِكُمۡ وَأَيۡدِيكُم مِّنۡهُۚ مَا يُرِيدُ ٱللَّهُ لِيَجۡعَلَ عَلَيۡكُم مِّنۡ حَرَجࣲ وَلَٰكِن يُرِيدُ لِيُطَهِّرَكُمۡ وَلِيُتِمَّ نِعۡمَتَهُۥ عَلَيۡكُمۡ لَعَلَّكُمۡ تَشۡكُرُونَ
You who believe, when you are about to pray, wash your faces and your hands up to the elbows, wipe your heads, wash your feet up to the ankles and, if required, wash your whole body. If any of you is sick or on a journey, or has just relieved himself, or had intimate contact with a woman, and can find no water, then take some clean sand and wipe your face and hands with it. God does not wish to place any burden on you: He only wishes to cleanse you and perfect His blessing on you, so that you may be thankful
Tafsīr
التفسير6 shownCommentary on the verses above, at most two editions per verse.
en-al-jalalayn on 48:17en-al-jalalayncommentary on an ayah this subject surfaced
There is no blame on the blind nor is there blame on the lame nor is there blame on the sick to refrain from participating in the struggle. And whoever obeys God and His Messenger He will admit him read yudkhilhu or nudkhilhu ‘We will admit him’ into gardens underneath which rivers flow; and whoever turns away him He will chastise read yu‘adhdhibhu or nu‘adhdhibhu ‘him We will chastise’ with a painful chastisement.
en-tafisr-ibn-kathir on 48:17en-tafisr-ibn-kathircommentary on an ayah this subject surfaced
Say to the bedouins who lagged behind: "You shall be called to fight against a people given to great warfare, then you shall fight them, or they shall surrender. Then if you obey, Allah will give you a fair reward; but if you turn away as you did turn away before, He will punish you with a painful torment. (16)No blame or sin is there upon the blind, nor is there sin upon the lame, nor is there sin upon the sick. And whosoever obeys Allah and His Messenger, He will admit him to Gardens beneath which rivers flow; and whosoever turns back, He will punish him with a painful torment (17)
Allah conveys the News that there will be Many Cases of Jihad, and that Jihad distinguishes the Ranks of the Believers and exposes the Hypocrites
Scholars of Tafsir differ over who the people mentioned here are. They are people experienced at warfare who will be called to fight. There are many opinions, fi
en-al-jalalayn on 9:91en-al-jalalayncommentary on an ayah this subject surfaced
As for the weak such as the old and the sick the blind and the chronically ill and those who find nothing to expend for the struggle no blame no sin falls upon them should they stay away from it if they remain true to God and to His Messenger when they stay behind by not spreading false rumours or impeding others from joining the struggle but by adhering to obedience. There is no way of blame no way of reproach against those who are virtuous through such behaviour. And God is Forgiving Merciful to them by granting them such leeway in this matter.
en-tafisr-ibn-kathir on 9:91en-tafisr-ibn-kathircommentary on an ayah this subject surfaced
There is no blame on those who are weak or ill or who find no resources to spend, if they are sincere and true (in duty) to Allah and His Messenger. No means (of complaint) can there be against the doers of good. And Allah is Oft-Forgiving, Most Merciful (91)Nor (is there blame) on those who came to you to be provided with mounts, when you said: "I can find no mounts for you," they turned back, with their eyes overflowing with tears of grief that they could not find anything to spend (92)The means (of complaint) is only against those who are rich, and yet ask exemption. They are content to be with (the women) who sit behind (at home) and Allah has sealed up their hearts so that they know not (what they are losing)(93)
Legitimate Excuses for staying away from Jihad
Allah mentions here the valid excuses that permit one to stay away from fighting. He first mentions the excuses that remain
en-asbab-al-nuzul-by-al-wahidi on 24:61en-asbab-al-nuzul-by-al-wahidicommentary on an ayah this subject surfaced
(No blame is there upon the blind�) [24:61]. Said ibn �Abbas: �When Allah, glorious and exalted is He, revealed (O ye who believe! Squander not your wealth among yourselves in vanity�) [4:29], the Muslims felt vexed to eat with the sick, the old, the blind and the lame. They said: �Food is the best part of one�s wealth, and Allah, exalted is He, has warned against squandering wealth in vanity. The blind cannot see where wholesome food is, the lame cannot compete over food and the sick cannot eat properly�. As a response, Allah, exalted is He, revealed this verse�. Sa�id ibn Jubayr and al-Dahhak said: �The lame and the blind used to feel vexed at eating with healthy people because the latter found them despicable and disliked eating with them. The people of Medina did not allow the blind, lame or sick person to share their food because they considered them dirty. For this reason, Allah, e
en-asbab-al-nuzul-by-al-wahidi on 4:43en-asbab-al-nuzul-by-al-wahidicommentary on an ayah this subject surfaced
O you who have faith! Do not approach the prayer when you are intoxicated until you know what you are saying, or defiled-except for travelers on the road-until you have made the full ablution.... Surely God is pardoning, forgiving. Intoxication is drunkenness. Drunkenness is disparate, and the drunkards diverse. One is drunk with the wine of the grape, another with the wine of heedlessness, another with love for this world, another with the frivolity of the soul and self-love. This last is the most difficult, for self-love is the basis of idol-worship, the seed of estrangement, the curtain of ill fortune, and the root of every darkness. If you are martyred a hundred times a day in the path of God you will still be an idol-worshiper if you see yourself in the midst. When will you be the man to want the heart without caprice? When you will have the pain to see the body with contempt? [DS 7
Research library, full list
476 to 500 of 828Workers with a chronic disease and work disability. Problems and solutions.
The prevalence of chronic diseases in the age group 18-65 years is high. Cardiometabolic conditions and musculoskeletal diseases are the most frequent chronic diseases. Depending on disease and comorbidity, the employment rates are considerably lower than for healthy individuals. Chronically ill workers may have problems in meeting job demands, they may experience physical, cognitive or sensory limitations, have fatigue or pain complaints or other disease symptoms. Psychological distress, depressive feelings, feelings of shame or guilt, lack of coping or communicative skills, and non-supportive colleagues and supervisors may add to work-related problems. The ICF Model (International Classification of Functioning, Disability and Health) of the WHO offers a framework for understanding and considering health-related problems at work and finding solutions. Interventions to prevent problems i…
matched on Chronic Disease (mesh), chronic illness (text)
Exercising control: exercise intention and perceived constraints in older adults with osteoarthritis.
Purpose of the study: Maintaining perceived psychological control in older adulthood is beneficial for health, well-being, and adjustment to chronic illness. Theoretically, control over specific, personally meaningful domains should inform general control beliefs. Thus, the objective of the present study was to examine perceived control over the exercise domain (operationalized as exercise intention belief) for its ability to predict general control beliefs in a sample of older adults with chronic illness over 1 year.
Design and methods: Longitudinal survey responses from 133 older adults with osteoarthritis (OA) were examined.
Results: Longitudinal hierarchical multiple regression analyses revealed that higher baseline exercise intention beliefs predicted a lower perception of constraints on control 9-12 months later, but did not predict changes in mastery beliefs.
Implications: Results…
matched on Chronic Disease (mesh), chronic illness (text)
Caregiving strain and all-cause mortality: evidence from the REGARDS study.
Objectives: Using a large, national sample, this study examined perceived caregiving strain and other caregiving factors in relation to all-cause mortality.
Method: The REasons for Geographic and Racial Differences in Stroke (REGARDS) study is a population-based cohort of men and women aged 45 years and older. Approximately 12% (n = 3,710) reported that they were providing ongoing care to a family member with a chronic illness or disability. Proportional hazards models were used for this subsample to examine the effects of caregiving status measures on all-cause mortality over the subsequent 5-year period, both before and after covariate adjustment.
Results: Caregivers who reported high caregiving strain had significantly higher adjusted mortality rates than both no strain (hazard ratio [HR] = 1.55, p = .02) and some strain (HR = 1.83, p = .001) caregivers. The mortality effects of careg…
matched on Chronic Disease (mesh), chronic illness (text)
Peery AI, Engelke MK, Swanson MS (2012)MEDLINE-indexed journal, not yet read by usThe Journal of school nursing : the official publication of the National Association of School Nurses24 citations Parent and teacher perceptions of the impact of school nurse interventions on children's self-management of diabetes.
Diabetes is a common chronic illness among school-age children. The school nurse collaborates with the student, parents, and teachers to help the child manage their diabetes effectively. Very little is known about the relationship between school nurse interventions and parent/teacher perceptions of the child's self-management. We examined this relationship in a sample of 69 school-age children who received case management from school nurses. Our findings suggest that teachers and parents do not always agree on how well a child manages their illness. When school nurses provide more education and counseling, parents are more likely to perceive an improvement in their child's self-management. Teachers are more likely to perceive an improvement when the nurse provides more classroom visits and includes the physical education teacher and guidance counselor. These findings suggest that the rol…
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Hill NJ, Hollis M (2012)MEDLINE-indexed journal, not yet read by usThe Journal of school nursing : the official publication of the National Association of School Nurses23 citations Teacher time spent on student health issues and school nurse presence.
Elementary school teacher time spent on student health issues and the relationship to school nurse services was the focus of this 2-year study. A cross-sectional design was used to survey traditional and exceptional (special needs) classroom teachers about the time they spent on health issues and their perception of school nurse presence. The school nurses were surveyed regarding the impact of their presence on early releases due to illness. Study findings related to teacher perceptions indicate with school nurse presence there are fewer early releases, increased communication, less time spent on health issues, students with chronic illnesses are safer, and there is a resource available for health information. The data provide the groundwork for discussions to improve the communication of the nurses' schedules, increase teacher confidence in consistent nurse hours at their school and aid…
matched on Chronic Disease (mesh), chronic illness (text)
Attachment, forgiveness, and physical health quality of life in HIV + adults.
Research aims to help HIV + individuals improve and maintain a healthy quality of life, while managing a chronic illness. Using Lazarus and Folkman's model of stress and coping, we examined the main and interactive effects of attachment style and forgiveness on physical health quality of life of HIV + adults. Participants (n=288, 49% women) were recruited in Dallas/Fort Worth and self-identified as African-American (52%), European-American (32%), Latino(a) (12%), and other (4%), with an average age of 41.7 (SD=8.6). The average number of years participants reported being HIV + was 7.6 (SD=5.4). Participants completed medical and demographic information, measures assessing attachment anxiety and avoidance, forgiveness of self and others, and five quality of life scales (physical functioning, pain, role functioning, social functioning, and health perceptions). Significant correlations reve…
matched on Chronic Disease (mesh), chronic illness (text)
The multidimensionality of spiritual wellbeing: peace, meaning, and faith and their association with quality of life and coping in oncology.
Objective: This study explored associations between the recently proposed three-factor structure of the 12-item Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp) subscale (Peace, Meaning, and Faith), quality of life (QoL), and coping in an oncology population.
Methods: A total of 999 newly diagnosed, study eligible, consecutive cancer patients completed the FACIT-Sp and the Mental Adjustment to Cancer (MAC) scale.
Results: Hierarchical multiple regressions revealed that Peace alone added 3% to the prediction of QoL and accounted for 15.8% of the overlap in Total Functional Assessment of Cancer Therapy--General (FACT-G) scores (both p<0.001). Meaning alone added 1.3% to QoL prediction and accounted for 5.8% in overlap (both p<0.001). Faith did not significantly contribute to the unique prediction or overlap of QoL. Correlational analyses revealed that Peace …
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Broger B, Zeni MB (2011)MEDLINE-indexed journal, not yet read by usJournal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners6 citations Fathers' coping mechanisms related to parenting a chronically ill child: implications for advanced practice nurses.
Introduction: The presence of a father has been positively associated with outcomes in several aspects of a child's life. This descriptive study investigated coping methods used by fathers of chronically ill children, fathers' perceived severity of the child's illness, and demographic differences related to coping mechanisms.
Method: A sample of 54 fathers of chronically ill children completed measurements of demographics, coping processes, and severity levels of their child's chronic condition. Data were analyzed with SPSS 14.0 using parametric and nonparametric tests to examine relationships and coping behaviors used by fathers in northwest Florida.
Results: A majority of fathers used an emotion-focused coping process with a religious dimension. No association was found between perceived level of severity of their child's illness and eight subscales used to measure coping methods; howe…
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Elliott BA (2011)MEDLINE-indexed journal, not yet read by usJournal of religion and health4 citations Forgiveness therapy: a clinical intervention for chronic disease.
Every year, chronic illnesses result in significant costs, disability and deaths. Efforts to understand the causes, treatments and management possibilities for chronic illnesses are ongoing. Some chronic conditions, including addictions, obesity, mental health circumstances, COPD and cirrhosis, have been identified as health conditions with social and interpersonal etiologies. Recent research documents that these conditions are related to adverse early life experience; treatment and prevention of these chronic conditions remains challenging. Concurrent research investigating forgiveness interventions has been reported in the counseling therapy literature, which may have enormous personal and public health impact.
matched on Chronic Disease (mesh), chronic illness (text)
Attributions about cause of illness in chronic obstructive pulmonary disease.
Objective: Patients' beliefs about the causes of their illness have been associated with emotional adjustment and behavioral outcomes in several medical conditions; however, few studies have examined illness attributions among patients with chronic obstructive pulmonary disease (COPD). In the current study, patterns of patients' causal attributions for COPD were identified and examined in relation to health behaviors and symptoms.
Method: Three-hundred and ninety-four patients with COPD and >10 pack year history of smoking completed a self-report questionnaire that included the Illness Perception Questionnaire-Revised (IPQ-R).
Results: A factor analysis of the IPQ-R cause items using principal axis factoring yielded four individual items (i.e., smoking, heredity, pollution, and personal behavior) and one large factor that was primarily driven by psychological attributions. Ninety-three p…
matched on Chronic Disease (mesh), chronic illness (text)
Religious/Spiritual coping in adolescents with sickle cell disease: a pilot study.
Religious/spiritual (R/S) coping has been associated with health outcomes in chronically ill adults; however, little is known about how adolescents use R/S to cope with a chronic illness such as sickle cell disease (SCD). Using a mixed method approach (quantitative surveys and qualitative interviews), we examined R/S coping, spirituality, and health-related quality of life in 48 adolescents with SCD and 42 parents of adolescents with SCD. Adolescents reported high rates of religious attendance and belief in God, prayed often, and had high levels of spirituality (eg, finding meaning/peace in their lives and deriving comfort from faith). Thirty-five percent of adolescents reported praying once or more a day for symptom management. The most common positive R/S coping strategies used by adolescents were: "Asked forgiveness for my sins" (73% of surveys) and "Sought God's love and care" (73% o…
matched on Chronic Disease (mesh), chronic illness (text)
Distanciation in Ricoeur's theory of interpretation: narrations in a study of life experiences of living with chronic illness and home mechanical ventilation.
Within the caring science paradigm, variations of a method of interpretation inspired by the French philosopher Paul Ricoeur's theory of interpretation are used. This method consists of several levels of interpretation: a naïve reading, a structural analysis, and a critical analysis and discussion. Within this paradigm, the aim of this article is to present and discuss a means of creating distance in the interpretation and the text structure by using narration in a poetic language linked to the meaning of the text. Ricoeur's 'Hermeneutical function of distanciation' will be introduced, and this concept of distanciation will be illustrated with reference to narrations from a study of patient's life experiences living with chronic illness and home mechanical ventilation in Denmark. Distanciation in the interpretation objectifies the text, and narration in a poetic language creates a partic…
matched on Chronic Disease (mesh), chronic illness (text)
Physician as partner or salesman? Shared decision-making in real-time encounters.
The results of recent research have led to the increased advocacy of shared decision-making regarding medical treatment. Nonetheless, only a limited number of studies have focused on the process of decision-making in real-time encounters. The present paper aims to document and analyze this process. Specifically, we assess whether these decisions are the result of partnership or of persuasive tactics based on power and hierarchical relationships. We will describe and analyze different strategies used by pediatric gastroenterologists in breaking bad news encounters, as well as their consequences. The analysis is based on a multi-method, multi-participant phenomenological study on breaking bad news to adolescents and their families regarding a chronic illness. It included 17 units of analysis (actual encounters and 52 interviews with physicians, parents and adolescents). Data were collected…
matched on Chronic Disease (mesh), chronic illness (text)
Economic hardship associated with managing chronic illness: a qualitative inquiry.
Background: Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness.
Methods: Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66). Content analysis guided the interpretation of data.
Results: The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in …
matched on Chronic Disease (mesh), chronic illness (text)
Social support and self-care of patients with heart failure.
Background: Social support can influence treatment adherence of patients with chronic illnesses, which may explain the positive effects of social support on heart failure (HF) outcomes.
Purpose: To investigate the effects of social support among patients with HF, we examined whether aspects of social support were associated with self-care, including medication adherence, dietary adherence, and HF symptom monitoring functions.
Methods: We recruited 74 patients with HF from cardiology clinics of a Veterans Affairs Medical Center and a university-affiliated hospital, and tested the relationships between social support and the patients' self-care.
Results: Consistent with previous research in older adults, family members, especially spouses, were often involved in the medical care of patients with chronic HF and provided a range of levels of support to patients. Self-care was generally poor,…
matched on Chronic Disease (mesh), chronic illness (text)
Brooks MV (2008)MEDLINE-indexed journal, not yet read by usClinical nursing research7 citations Health-related hardiness in individuals with chronic illnesses.
The aims of this study were to (a) describe health stressors, health-related hardiness, perception of illness impact, self-perception of health status, and psychosocial adjustment to illness in individuals living with an inherited bleeding disorder; (b) determine relationships between health stressors, health-related hardiness, perception of illness impact, self-perception of health status, and psychosocial adjustment to illness; and (c) determine if perception of illness impact had a direct and/or mediating effect on the relationship between health stressors, health-related hardiness, and self-perception of health status and psychosocial adjustment to illness. A cross-sectional survey design was used. Sixty participants composed the sample. Participants completed five questionnaires. Higher health stressors were associated with higher perception of illness impact, lower perception of he…
matched on Chronic Disease (mesh), chronic illness (text)
Reconsidering patient empowerment in chronic illness: a critique of models of self-efficacy and bodily control.
Studies that focus on patient empowerment tend to address more specifically two issues of patients' experience of illness: managing regimens and relating to health-care providers. Other aspects of illness experience, such as coming to terms with disrupted identities, tend to be overlooked. The outcome of empowerment is therefore usually referred to as achieving self-efficacy, mastery and control. We conducted an inductive exploratory study, based on individual in-depth interviews with 40 chronically ill patients in Belgium and Italy, in order to understand the process of empowerment as it may occur in patients whose experience of illness has at some point induced a feeling of powerlessness, which we conceptualised as a threat to their senses of security and identity. Our findings show that empowerment and control are not one and the same thing. We describe patient empowerment as a proces…
matched on Chronic Disease (mesh), chronic illness (text)
Self-management in older patients with chronic illness.
Chronic illness causes the majority of disease burden and health costs in developed countries; however, this could be substantially reduced by optimal patient self-management. This study examined the levels of self-management in patients (n = 300) with chronic illness (chronic heart failure, chronic respiratory disease, Parkinson's disease and chronic schizophrenia) of moderate severity who had experienced an illness exacerbation in the last month. Patient's perceptions of self-efficacy in relation to their self-management and their sense of coherence were also assessed at baseline and 1 month later. No changes occurred in self-perceptions or self-management from baseline to follow-up. Patients at risk of poor self-management included people with low self-efficacy, poor sense of coherence, older age and a primary diagnosis of chronic schizophrenia. As self-efficacy is the only predictor …
matched on Chronic Disease (mesh), chronic illness (text)
Psychosocial aspects of chronic disease: ESRD as a paradigmatic illness.
Psychosocial issues are an understudied yet important concern in the overall health of hemodialysis (HD) patients. Stress is a concomitant of chronic illness and its treatment, and may have meaningful influences on psychological and medical outcomes. This article reviews the influences of psychopathology, social support, family issues, dialysis unit culture, and socioeconomic status on patients treated with center HD. Depressive affect and decreased perception of social support have been linked with mortality in several studies of ESRD patients. Decreased marital satisfaction, disturbances in family dynamics, and lower socioeconomic status (SES) have been associated with poorer health outcomes and can affect patients' perception of social support and depressive affect. Chronically ill ESRD patients who undergo treatment with constant interaction and observation by medical staff are poten…
matched on Chronic Disease (mesh), chronic illness (text)
Fitzsimons D, Mullan D, Wilson JS, Conway B, Corcoran B, Dempster M, Gamble J, Stewart C, Rafferty S, McMahon M, MacMahon J, Mulholland P, Stockdale P, Chew E, Hanna L, Brown J, Ferguson G, Fogarty D (2007)MEDLINE-indexed journal, not yet read by usPalliative medicine165 citations The challenge of patients' unmet palliative care needs in the final stages of chronic illness.
Background: There is consensus in the literature that the end of life care for patients with chronic illness is suboptimal, but research on the specific needs of this population is limited.
Aim: This study aimed to use a mixed methodology and case study approach to explore the palliative care needs of patients with a non-cancer diagnosis from the perspectives of the patient, their significant other and the clinical team responsible for their care. Patients (n = 18) had a diagnosis of either end-stage heart failure, renal failure or respiratory disease.
Methods: The Short Form 36 and Hospital and Anxiety and Depression Questionnaire were completed by all patients. Unstructured interviews were (n = 35) were conducted separately with each patient and then their significant other. These were followed by a focus group discussion (n = 18) with the multiprofessional clinical team. Quantitative …
matched on Chronic Disease (mesh), chronic illness (text)
Perceptions and utilization of palliative care services in acute care hospitals.
Objective: To understand perceptions of palliative care in acute care hospitals and identify barriers to earlier use of palliative care in the illness trajectory.
Methods: In Pennsylvania hospitals, we completed semistructured interviews with 131 providers involved in decision making or discharge planning. We used qualitative methods to analyze transcripts.
Results: Most interviewees characterized palliative care as end-of-life or hospice care that is initiated after the decision to limit curative treatment is made. Few recognized the role of palliative care in managing symptoms and addressing psychosocial needs of patients with chronic illnesses other than cancer. Interviewees viewed earlier and broader palliative care consultations less in terms of clinical benefits than in terms of cost savings accrued from shorter terminal hospitalizations. In general, they thought nurses were most l…
matched on Chronic Disease (mesh), chronic illness (text)
The relationship of parental overprotection, perceived child vulnerability, and parenting stress to uncertainty in youth with chronic illness.
Objective: To examine the relationship of parent-reported overprotection (OP), perceived child vulnerability (PCV), and parenting stress (PS) to youth-reported illness uncertainty, and to explore potential developmental differences.
Method: Eighty-two children and 82 adolescents (n = 164) diagnosed with Type 1 diabetes mellitus (DM1) or asthma, completed a measure of illness uncertainty, while their parents completed measures of OP, PCV, and PS.
Results: After controlling for demographic and illness parameters, both PCV and PS significantly predicted youth illness uncertainty in the combined sample. Within the child group, only PS significantly predicted illness uncertainty, whereas only PCV significantly predicted uncertainty for adolescents.
Conclusion: Specific parenting variables are associated with youth-reported illness uncertainty; however, their relationship varies according to d…
matched on Chronic Disease (mesh), chronic illness (text)
The interpersonal experience of health care through the eyes of patients with diabetes.
Patients with chronic illness often face challenges navigating the US health care system because of the system's lack of coordination and continuity. Patients with more difficulty relying on others and with reluctance in engaging frequently or in-depth with providers, face even greater challenges obtaining optimal health care in this system. Using a self-report measure of attachment style, we selected patients with varying degrees of comfort and trust in relationships. We conducted qualitative semi-structured interviews with a purposive sample of 27 patients with type 2 diabetes attending the University of Washington Diabetes Care Center in Seattle to explore issues of trust and collaboration in the health care setting. We used a constant comparative approach in which contemporaneous data collection and analysis took place. A subset of patients with fearful and dismissing attachment styl…
matched on Chronic Disease (mesh), chronic illness (text)
An example of psychological adjustment in chronic illness: Hirschsprung's disease.
The aim of this study was to investigate the outcomes after definitive surgical correction for children with Hirschsprung's disease (HD) and the psychosocial impact of HD on the child and family. The total sample comprised 72 children with HD along with their families. The development of a condition-specific questionnaire measured the functional and psychosocial outcomes for children with HD with parental perception of their child's condition. Psychiatric measures were also examined to assess psychiatric morbidity. The greatest functional problem after definitive surgery for HD was faecal soiling (76%). The principle findings of the study were that (1) HD did not have a significant impact on the child's rate of psychiatric morbidity and levels of hopefulness in comparison to the normal population, (2) surgical and psychosocial functioning improved with increasing age and, (3) families re…
matched on Chronic Disease (mesh), chronic illness (text)
Perceived conflict in the couple and chronic illness management: preliminary analyses from the Quebec Health Survey.
Background: The quality of the relationship with the spouse/partner appears crucial among patients with multiple chronic conditions where illness management is complex and multifaceted. This study draws on data from the Quebec Health Survey (QHS) to examine, among patients with one or more chronic conditions, the relation between marital status, the perceived conflict with the spouse/partner, and what the patients do to manage their illness as well as how they perceive their health.
Methods: Data from the QHS 1998 were used. The sample included 7547 coupled adults who had one or more chronic health problems lasting more than 6 months. Independent variables included marital status, perceived conflict with the spouse/partner, and the number of chronic conditions. Illness management was defined broadly as a measure of the patient's efforts at self-care and an illness status indicator, inclu…
matched on Chronic Disease (mesh), chronic illness (text)