Caregiving burden

وَكَانَ يَأۡمُرُ أَهۡلَهُۥ بِٱلصَّلَوٰةِ وَٱلزَّكَوٰةِ وَكَانَ عِندَ رَبِّهِۦ مَرۡضِيࣰّ ا

He commanded his household to pray and give alms, and his Lord was well pleased with him

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

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

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

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

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

(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

(And when thou (O Muhammad) art among them and arrangest (their) worship for them�) [4:102]. The teacher Abu �Uthman al-Za�farani al-Muqri� informed us in the year [4]25> Abu Muhammad �Abd Allah ibn Muhammad ibn �Ali ibn Ziyad al-Suddi in the year 363> Abu Sa�id al-Fadl ibn Muhammad al-Jazari in the Sacred Mosque, Mecca, in 304> �Ali ibn Ziyad al-Lahji> Abu Qurrah Musa ibn Tariq> Sufyan> Mansur> Mujahid> Abu �Ayyash al-Zurraqi who said: �We performed the prayer of Zuhr with the Messenger of Allah, Allah bless him and give him peace, upon which the idolaters exclaimed: �They were in a vulnerable situation, why did we not attack them by surprise?� Then they said: �There shall come another prayer which is more beloved to them than their own fathers, which is the midafternoon (�Asr) prayer�. Gabriel, peace be upon him, then came down with these verses between the Zuhr and the �Asr prayers. (

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

O you who have faith, when you stand for the prayer, wash your faces and your hands up to your elbows.... If you find no water, have recourse to goodly dust. Outward purity has three sections: First is purity after impurity. Second is purity after excretion and sexual activity. Third is purity from the sheddings of the body, such as nails, hair, dirt, and so on. Each of these three sections has an explanation and an explication, and these will be spoken of elsewhere, God willing. Inward purity has three duties: First, purity of the limbs from disobedience, such as back- biting, lying, eating the forbidden, betrayal, and looking at women illicitly. When this purity is gained, the servant is adorned with obedience and reverence. This is the degree of the faith of the pious. Its mark is that the remembrance of the Real is always on their tongue, the fruit of the prom- ise in their heart, th

When you O Muhammad (s) are present among them while you all fear an enemy and you stand to lead them in prayer this type of address is customary in the Qur’ān let a party of them stand with you while another party stand back and let them the party standing with you take their weapons with them. Then when they have performed their prostrations that is when they have prayed let them the other party be behind you on guard until you complete the prayers; thereupon let this party go on guard and let another party who have not prayed come and pray with you taking their precautions and their weapons with them until you have completed the prayers. The Prophet s did this once at Batn Nakhla as reported by the two Shaykhs Bukhārī and Muslim. The disbelievers wish when you have stood up to pray that you should be heedless of your weapons and your baggage that they may descend upon you all at once

O you who believe draw not near to prayer that is do not perform prayer whilst you are inebriated by a drink this was revealed concerning being drunk during the congregational prayer; until you know what you are saying when you have sobered up; nor whilst you are defiled as a result of sexual penetration or ejaculation junuban ‘defiled’ is in the accusative because it is a circumstantial qualifier and may be used to refer to the singular or plural — unless you are traversing crossing a way a route that is unless you are travelling — until you have washed yourselves in which case you may perform prayer a proviso is made for the traveller because a different stipulation applies to him as will follow. It is said that the purpose of this verse is to prohibit the approach to places of prayer that is mosques the exception being if one were merely passing through and not staying. But if you are

حَدَّثَنَا آدَمُ بْنُ أَبِي إِيَاسٍ، حَدَّثَنَا شُعْبَةُ، عَنْ عَدِيِّ بْنِ ثَابِتٍ، قَالَ سَمِعْتُ عَبْدَ اللَّهِ بْنَ يَزِيدَ الأَنْصَارِيَّ، عَنْ أَبِي مَسْعُودٍ الأَنْصَارِيِّ، فَقُلْتُ عَنِ النَّبِيِّ فَقَالَ عَنِ النَّبِيِّ صلى الله عليه وسلم قَالَ ‏ "‏ إِذَا أَنْفَقَ الْمُسْلِمُ نَفَقَةً عَلَى أَهْلِهِ وَهْوَ يَحْتَسِبُهَا، كَانَتْ لَهُ صَدَقَةً ‏"‏‏.‏

Narrated Abu Mas`ud Al-Ansari:The Prophet (ﷺ) said, "When a Muslim spends something on his family intending to receive Allah's reward it is regarded as Sadaqa for him

حَدَّثَنَا إِسْمَاعِيلُ، قَالَ حَدَّثَنِي مَالِكٌ، عَنْ أَبِي الزِّنَادِ، عَنِ الأَعْرَجِ، عَنْ أَبِي هُرَيْرَةَ ـ رضى الله عنه ـ أَنَّ رَسُولَ اللَّهِ صلى الله عليه وسلم قَالَ ‏ "‏ قَالَ اللَّهُ أَنْفِقْ يَا ابْنَ آدَمَ أُنْفِقْ عَلَيْكَ ‏"‏‏.‏

Narrated Abu Huraira:Allah's Messenger (ﷺ) said, "Allah said, 'O son of Adam! Spend, and I shall spend on you

حَدَّثَنِي عَبْدُ اللَّهِ بْنُ مُحَمَّدٍ، حَدَّثَنَا عَبْدُ الْمَلِكِ بْنُ عَمْرٍو، حَدَّثَنَا زُهَيْرُ بْنُ مُحَمَّدٍ، عَنْ مُحَمَّدِ بْنِ عَمْرِو بْنِ حَلْحَلَةَ، عَنْ عَطَاءِ بْنِ يَسَارٍ، عَنْ أَبِي سَعِيدٍ الْخُدْرِيِّ، وَعَنْ أَبِي هُرَيْرَةَ، عَنِ النَّبِيِّ صلى الله عليه وسلم قَالَ ‏ "‏ مَا يُصِيبُ الْمُسْلِمَ مِنْ نَصَبٍ وَلاَ وَصَبٍ وَلاَ هَمٍّ وَلاَ حُزْنٍ وَلاَ أَذًى وَلاَ غَمٍّ حَتَّى الشَّوْكَةِ يُشَاكُهَا، إِلاَّ كَفَّرَ اللَّهُ بِهَا مِنْ خَطَايَاهُ ‏"‏‏.‏

Narrated Abu Sa`id Al-Khudri and Abu Huraira:The Prophet (ﷺ) said, "No fatigue, nor disease, nor sorrow, nor sadness, nor hurt, nor distress befalls a Muslim, even if it were the prick he receives from a thorn, but that Allah expiates some of his sins for that

حَدَّثَنَا إِبْرَاهِيمُ بْنُ الْمُنْذِرِ، قَالَ حَدَّثَنِي مُحَمَّدُ بْنُ فُلَيْحٍ، قَالَ حَدَّثَنِي أَبِي، عَنْ هِلاَلِ بْنِ عَلِيٍّ، مِنْ بَنِي عَامِرِ بْنِ لُؤَىٍّ عَنْ عَطَاءِ بْنِ يَسَارٍ، عَنْ أَبِي هُرَيْرَةَ ـ رضى الله عنه ـ قَالَ قَالَ رَسُولُ اللَّهِ صلى الله عليه وسلم ‏ "‏ مَثَلُ الْمُؤْمِنِ كَمَثَلِ الْخَامَةِ مِنَ الزَّرْعِ مِنْ حَيْثُ أَتَتْهَا الرِّيحُ كَفَأَتْهَا، فَإِذَا اعْتَدَلَتْ تَكَفَّأُ بِالْبَلاَءِ، وَالْفَاجِرُ كَالأَرْزَةِ صَمَّاءَ مُعْتَدِلَةً حَتَّى يَقْصِمَهَا اللَّهُ إِذَا شَاءَ ‏"‏‏.‏

Narrated Abu Huraira:Allah's Messenger (ﷺ) said, "The example of a believer is that of a fresh tender plant; from whatever direction the wind comes, it bends it, but when the wind becomes quiet, it becomes straight again. Similarly, a believer is afflicted with calamities (but he remains patient till Allah removes his difficulties.) And an impious wicked person is like a pine tree which keeps hard and straight till Allah cuts (breaks) it down when He wishes." (See Hadith No. 558, Vol)

حَدَّثَنَا مُحَمَّدُ بْنُ بَشَّارٍ، أَخْبَرَنَا يَحْيَى بْنُ سَعِيدٍ، أَخْبَرَنَا بَهْزُ بْنُ حَكِيمٍ، حَدَّثَنِي أَبِي، عَنْ جَدِّي، قَالَ قُلْتُ يَا رَسُولَ اللَّهِ مَنْ أَبَرُّ قَالَ ‏"‏ أُمَّكَ ‏"‏ ‏.‏ قَالَ قُلْتُ ثُمَّ مَنْ قَالَ ‏"‏ أُمَّكَ ‏"‏ ‏.‏ قَالَ قُلْتُ ثُمَّ مَنْ قَالَ ‏"‏ أُمَّكَ ‏"‏ ‏.‏ قَالَ قُلْتُ ثُمَّ مَنْ قَالَ ‏"‏ ثُمَّ أَبَاكَ ثُمَّ الأَقْرَبَ فَالأَقْرَبَ ‏"‏ ‏.‏ قَالَ وَفِي الْبَابِ عَنْ أَبِي هُرَيْرَةَ وَعَبْدِ اللَّهِ بْنِ عُمَرَ وَعَائِشَةَ وَأَبِي الدَّرْدَاءِ ‏.‏ قَالَ أَبُو عِيسَى وَبَهْزُ بْنُ حَكِيمٍ هُوَ ابْنُ مُعَاوِيَةَ بْنِ حَيْدَةَ الْقُشَيْرِيُّ ‏.‏ وَهَذَا حَدِيثٌ حَسَنٌ ‏.‏ وَقَدْ تَكَلَّمَ شُعْبَةُ فِي بَهْزِ بْنِ حَكِيمٍ وَهُوَ ثِقَةٌ عِنْدَ أَهْلِ الْحَدِيثِ وَرَوَى عَنْهُ مَعْمَرٌ وَالثَّوْرِيُّ وَحَمَّادُ بْنُ سَلَمَةَ وَغَيْرُ وَاحِدٍ مِنَ الأَئِمَّةِ ‏.‏

Bahz bin Hakim narrated from his father, from his grandfather who said:"I said: 'O Messenger of Allah! Who most deserves(my) reverence?' He said: 'Your mother.'" He said: "I said: 'Then who?' He said: 'Your mother.'" He said: "I said: 'Then who?' He said: 'Your mother.'" He said: "I said: 'Then who?' He said: 'Then your father, then the nearest relatives, then the nearest relatives

حَدَّثَنَا أَحْمَدُ بْنُ مُحَمَّدٍ، أَخْبَرَنَا عَبْدُ اللَّهِ بْنُ الْمُبَارَكِ، عَنِ الْمَسْعُودِيِّ، عَنِ الْوَلِيدِ بْنِ الْعَيْزَارِ، عَنْ أَبِي عَمْرٍو الشَّيْبَانِيِّ، عَنِ ابْنِ مَسْعُودٍ، قَالَ سَأَلْتُ رَسُولَ اللَّهِ صلى الله عليه وسلم فَقُلْتُ يَا رَسُولَ اللَّهِ أَىُّ الأَعْمَالِ أَفْضَلُ قَالَ ‏"‏ الصَّلاَةُ لِمِيقَاتِهَا ‏"‏ ‏.‏ قُلْتُ ثُمَّ مَاذَا يَا رَسُولَ اللَّهِ قَالَ ‏"‏ بِرُّ الْوَالِدَيْنِ ‏"‏ ‏.‏ قُلْتُ ثُمَّ مَاذَا يَا رَسُولَ اللَّهِ قَالَ ‏"‏ الْجِهَادُ فِي سَبِيلِ اللَّهِ ‏"‏ ‏.‏ ثُمَّ سَكَتَ عَنِّي رَسُولُ اللَّهِ صلى الله عليه وسلم وَلَوِ اسْتَزَدْتُهُ لَزَادَنِي ‏.‏ قَالَ أَبُو عِيسَى وَهَذَا حَدِيثٌ حَسَنٌ صَحِيحٌ ‏.‏ رَوَاهُ الشَّيْبَانِيُّ وَشُعْبَةُ وَغَيْرُ وَاحِدٍ عَنِ الْوَلِيدِ بْنِ الْعَيْزَارِ وَقَدْ رُوِيَ هَذَا الْحَدِيثُ مِنْ غَيْرِ وَجْهٍ عَنْ أَبِي عَمْرٍو الشَّيْبَانِيِّ عَنِ ابْنِ مَسْعُودٍ ‏.‏ وَأَبُو عَمْرٍو الشَّيْبَانِيُّ اسْمُهُ سَعْدُ بْنُ إِيَاسٍ ‏.‏

Ibn Mas'ud said:"I asked the Messenger of Allah: 'O Messenger of Allah! Which is the most virtuous of deeds?' He said: 'Salat during its appropriate time.' I said: 'Then what, O Messenger of Allah?' He said: 'Being dutiful to one's parents.' I said: 'Then what, O Messenger of Allah?' He said: 'Jihad in the cause of Allah.' Then the messenger of Allah was silent, and if I had asked him more, he would have told me more

وروي أنه قال صلى الله عليه وسلم عيادة المريض بعد ثلاث فواق ناقة + حديث عيادة المريض فواق ناقة أخرجه ابن أبي الدنيا في كتاب المرض من حديث أنس بإسناد فيه جهالة +

وقال ابن عباس رضي الله عنهما عيادة المريض مرة سنة فما ازدادت فنافلة وقال بعضهم عيادة المريض بعد ثلاث

أما النيل فبحضور الجنائز وعيادة المريض وحضور العيدين وأما حضور الجمعة فلا بد منه

| 7 - كتاب عيادة المريض #

| 1 - باب عيادة المريض

| 15 - باب استحباب الذهاب إلى العيد وعيادة المريض والحج ونحوها من طريق والرجوع من طريق آخر لتكثير مواضع العبادة

Evaluation of a telephone-based support group intervention for female caregivers of community-dwelling individuals with dementia.: Family caregivers, the "second victims" or hidden patients in dementia care, are at risk for social isolation, stress, depression, and mortality. Telephone-based support (telesupport groups) represents a practical, low-burden, low-cost source of emotional support. The present study evaluated the feasibility and effectiveness of professionally led telephone-based support groups for female family caregivers of community-dwelling dementia patients. Recruited through various community sources, 103 f

Remotely delivered information, training and support for informal caregivers of people with dementia.: Background: Many people with dementia are cared for at home by unpaid informal caregivers, usually family members. Caregivers may experience a range of physical, emotional, financial and social harms, which are often described collectively as caregiver burden. The degree of burden experienced is associated with characteristics of the caregiver, such as gender, and characteristics of the person with dementia, such as dementia stage, and the presence of behavioural problems or neuropsychiatric dis

Comparative efficacy of 11 non-pharmacological interventions on depression, anxiety, quality of life, and caregiver burden for informal caregivers of people with dementia: A systematic review and network meta-analysis.: Background: In recent years, numerous dementia caregiving interventions for informal caregivers of community-dwelling people with dementia have been developed. However, it remains unclear which non-pharmacological interventions are effective and preferred for their depression and anxiety symptoms, quality of life, and caregiver burden. Objectives: To compare and rank the efficacy of different non-pharmacological interventions on depression, anxiety, quality of life, and caregiver burden for info

The association between subjective caregiver burden and depressive symptoms in carers of older relatives: A systematic review and meta-analysis.: Background: Family carers are an important source of care for older people. Although several studies have reported that subjective caregiver burden is related to depressive symptoms there are no systematic reviews quantifying this association. Objective: To establish the extent to which subjective caregiver burden is associated with depressive symptoms and whether this association would vary by study or care characteristics. Methods: We searched major databases such as PubMed, CINAHL, PsycINFO,

Digital tools for delivery of dementia education for caregivers of persons with dementia: A systematic review and meta-analysis of impact on caregiver distress and depressive symptoms.: Continuing education for dementia has been shown to be beneficial by improving informal caregiver knowledge, dementia care, management, and caregiver physical and mental health. Technology-based dementia education has been noted to have equivalent effects as in-person education, but with the added benefit of asynchronous and/or remote delivery, which increases accessibility. Using Cochrane review methodology, this study systematically reviewed the literature on technology-based dementia educatio

Subjective caregiver burden and anxiety in informal caregivers: A systematic review and meta-analysis.: There is increasing evidence that subjective caregiver burden is an important determinant of clinically significant anxiety in family carers. This meta-analysis aims to synthesise this evidence and investigate the relationship between subjective caregiver burden and anxiety symptoms in informal caregivers. We searched PubMed, CINAHL and PsycINFO up to January 2020. Combined estimates were obtained using a random-effects model. After screening of 4,312 articles, 74 studies (with 75 independent sa

"Thoughts Can Kill You": Characterization of Mental Health Symptoms by Ugandan Grandparent-Caregivers in the HIV/AIDS Era.

Studies of caregiving provided to HIV/AIDS orphans by sub-Saharan African grandparents have found that it has physical, financial, and emotional consequences. Our study extended this research by identifying and characterizing the symptoms experienced by Ugandan grandparent- caregivers, particularly as related to the caregiving role, loss and grief. Grounded theory methodology was used to conduct and analyze audio-recorded, semi-structured interviews with 32 grandparents. Findings revealed a cluster of biopsychosocial distress symptoms, especially anguish (driven by traumatic anxiety and disbelief), depression, and somatic symptoms that were linked primarily to psychological distress. The impact of cultural practices and beliefs on these symptoms was also identified. Results have implications for public health, research, and policy changes needed to alleviate symptoms of biopsychosocial d…

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Health promotion for mild frailty based on behaviour change: Perceptions of older people and service providers.

Mild frailty is common among older people, but it is potentially reversible with health promotion interventions. Behaviour change may be a key to preventing progression of frailty; however, we know little about what interventions work best and how a behaviour change approach would be perceived by this group. The aim of this study was to explore how mildly frail older people perceive health promotion based on behaviour change and what factors affect engagement with this approach. We conducted semi-structured interviews with 16 older people with mild frailty who received a pilot home-based behaviour change health promotion service, including a dyad of older person/family carer, and two service providers delivering the service in two diverse areas of South England. Interviews were audio-recorded, transcribed and thematically analysed. The concept of goal setting was acceptable to most parti…

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Spousal Caregivers Are Caregiving Alone In The Last Years Of Life.

Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers-that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's self-care or household activities-would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement o…

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Biopsychosocial experiences and coping strategies of elderly ESRD patients: a qualitative study to inform the development of more holistic and person-centred health services in Singapore.

Background: As the incidence and prevalence rates of end stage renal disease (ESRD) rise globally, a disproportionate increase has been observed in the elderly population. Singapore has the fifth highest incidence of treated ESRD worldwide, with the upward trend of ESRD being most apparent among those aged 70 years and older. Although it is well-documented that ESRD patients suffer an impaired quality of life compared to the general population, there is limited research focusing on the unique experiences and needs of elderly ESRD patients in Asian populations. To address the knowledge gap, this study seeks to explore the impact of ESRD and dialysis on the quality of life of elderly (≥70 years old) ESRD patients in Singapore and examine the coping strategies utilised by these patients. Methods: This qualitative study involved semi-structured, in-depth interviews with 7 peritoneal dialysis…

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Emotional disclosure as a therapeutic intervention in palliative care: a scoping review protocol.

Introduction: Emotional disclosure (ED) is a term used to describe the therapeutic expression of emotion. ED underlies a variety of therapies aimed at improving well-being for various populations, including people with palliative-stage disease and their family carers. Systematic reviews of ED-based psychotherapy have largely focused on expressive writing as a way of generating ED. However, heterogeneity in intervention format and outcome measures has made it difficult to analyse efficacy. There is also debate about the mechanisms proposed to explain the potential effects of ED.We present a scoping review protocol to develop a taxonomy of ED-based interventions to identify and categorise the spectrum of interventions that could be classified under the umbrella term of 'emotional disclosure' in the palliative care setting. By mapping these to associated treatment objectives, outcome measur…

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Adverse Childhood Experiences and Household Food Insecurity: Findings From the 2016 National Survey of Children's Health.

Introduction: Research has linked adverse childhood experiences to a host of negative health outcomes. The present study examines the link between individual and cumulative adverse childhood experience exposure and household food insecurity in a recent, nationally representative sample of children, and whether parent self-rated well-being attenuates these associations. Methods: Data from the 2016 National Survey of children's Health were analyzed in 2018 (n=50,212). Information concerning children's exposure to multiple forms of adversity, household availability of food, and parent self-rated well-being were available in the data. Multinomial logistic regression was performed to analyze the data. Results: Findings suggest that the accumulation of adverse childhood experiences is associated with higher odds of food insecurity, with stronger associations between adverse childhood experienc…

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Association of Timing of Adverse Childhood Experiences and Caregiver Support With Regionally Specific Brain Development in Adolescents.

Importance: Few data are available to inform the associations and timing of the associations between adversity, caregiver support, and brain outcomes. Consideration of timing has important public health implications to inform more precise prevention strategies. Objective: To evaluate the timing and regional specificity of the association between adverse childhood experiences (ACEs) and caregiver support to structural development of limbic and striatal brain regions in middle childhood and adolescence. Design, setting, and participants: This 15-year developmental, neuroimaging cohort study included 211 children and their caregivers screened from day care centers and preschools in the St Louis, Missouri, metropolitan area during the preschool period, with an additional 4 waves of neuroimaging at school age through adolescence from November 14, 2007, to August 29, 2017. The cohort was overs…

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Overcoming the challenges of caring for a child with foetal alcohol spectrum disorder: a Pilbara community perspective.

Introduction Foetal alcohol spectrum disorder (FASD) is a neurodevelopmental impairment that may result in individuals experiencing poor development, cognitive issues and disruptive behaviours. In Australia, the prevalence of FASD is unknown; however, two studies have revealed the prevalence of FASD in high risk populations in Western Australia. Individuals with FASD may experience higher rates of negative outcomes including poor school performance, involvement with the justice system and incarceration, substance use and are at risk of being placed in out-of-home care. Caregivers of children with FASD can experience challenges and high levels of stress due to the disruptive behaviours displayed by many children diagnosed with FASD. Whilst experiences of caregivers raising children with FASD have been documented globally, little is known about the experiences of caregivers in a remote Aus…

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"He can send her to her parents": The interaction between marriageability, gender and serious mental illness in rural Ethiopia.

Background: For women in most low- and middle-income countries, the diagnosis with serious mental illness (SMI) leads to stigma and challenges related to starting or maintaining marriages. The purpose of this qualitative study was to explore perspectives on marriage, divorce and family roles of women with SMI in rural Ethiopia. Methods: A qualitative study was conducted in a rural setting of Butajira, South Central Ethiopia. A total of 39 in-depth interviews were carried out with service users (n = 11), caregivers (n = 12), religious leaders (n = 6), health extension workers (n = 4), police officers (n = 2), teachers (n = 2) and government officials (n = 2). Data were analyzed using a thematic approach. Results: Three themes emerged. (1) Marriage and SMI: Chances of getting married for individuals with SMI in general was perceived to be lower: Individuals with SMI experienced various cha…

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Understanding caregiver goals, benefits, and acceptable risks of peanut allergy therapies.

Background: Both oral immunotherapy (OIT) and epicutaneous immunotherapy (EPIT) are emerging potential treatments for peanut allergy. Caregiver goals and expectations of these therapies are poorly defined. Objective: To determine caregiver goals and expectations of food allergy therapy. Methods: Twenty-two detailed, semistructured interviews of OIT and EPIT caregivers were conducted, allowing caregivers to describe their motivations for and experiences with food allergy therapy and life with a peanut allergic child. Results: In this sample, caregivers of peanut allergic children enrolled in OIT or EPIT phase 3 trials expressed a primary goal for their child to develop a buffer against an unintentional peanut exposure. The perception of the buffer varied, representing a decreased reaction severity on exposure, increased time to react to allow for assessment, or increased threshold of pean…

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In vitro proinflammatory gene expression predicts in vivo telomere shortening: A preliminary study.

The chronic psychological stress of caregiving leads to higher risks for many diseases. One of the mechanisms through which caregiving is associated with disease risk is chronic inflammation. Chronic inflammation may accelerate cellular aging via telomere dysfunction and cell senescence, although this has not been examined in human cells from healthy people. We examined peripheral blood mononuclear cells (PBMCs) from 20 healthy mothers of children with autism (caregivers) and 19 mothers of neurotypical children (controls) in an in vitro culture system where PBMCs were stimulated with phytohaemagglutinin (PHA). We measured RNA expression levels of a panel of immune function genes before and after PHA stimulation, as well as telomere length from PBMCs collected from the participants at baseline and 15 months later. Caregivers and controls had similar gene expression profiles in unstimulate…

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A Longitudinal Analysis of Well-Being of Ghanaian Children in Transnational Families.

This study is the first to employ panel data to examine well-being outcomes-self-rated health, happiness, life satisfaction, and school enjoyment-of children in transnational families in an African context. It analyzes data collected in 2013, 2014, and 2015 from secondary schoolchildren and youth (ages 12-21) in Ghana (N = 741). Results indicate that children with fathers, mothers, or both parents away and those cared for by a parent, a family, or a nonfamily member are equally or more likely to have higher levels of well-being as children in nonmigrant families. Yet, there are certain risk factors-being a female, living in a family affected by divorce or by a change in caregiver while parents migrate-that may decrease child well-being.

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Can family-centered programing mitigate HIV risk factors among orphaned and vulnerable adolescents? Results from a pilot study in South Africa.

Let's Talk is a structured, family-centered adolescent HIV prevention program developed for use in South Africa using key components adapted from programs successfully implemented in the US and South Africa. It is designed to address individual HIV transmission risk factors common among orphaned and vulnerable adolescents, including elevated risk for poor psychological health and sexual risk behavior. These efforts are accentuated through parallel programing to support caregivers' mental health and parenting skills. Twelve Let's Talk groups, each serving approximately 10 families, were piloted by two local community-based organizations in Gauteng and Kwa-Zulu Natal provinces, South Africa. Face-to-face interviews were conducted among participating caregivers and adolescents at baseline and three months post-intervention to explore the potential effects of the program on intermediate outc…

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The Association Between Child and Family Characteristics and the Mental Health and Wellbeing of Caregivers of Children with Autism in Mid-Childhood.

We examined predictors of mental health difficulties and wellbeing in caregivers of children with autism in the Pre-school Autism Communication Trial cohort in middle childhood (N = 104). Child's intellectual disability, daily living skills impairment, elevated emotional and behavioural difficulties, high educational level of caregiver and household income below the median significantly predicted caregivers' mental health difficulties, but autism severity, child communication skills and family circumstances did not. Lower caregiver mental wellbeing was predicted by elevated child emotional and behavioural difficulties. The need to support the mental health and wellbeing of caregivers of children with autism is discussed in light of the results.

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Transition to work: Perspectives from the autism spectrum.

To improve employment outcomes for adults with autism spectrum disorder, it is necessary to identify factors associated with successful transition to work from the perspectives of the individual and from those who work with or support them. This study involved focus groups with adults with autism spectrum disorder ( n = 9) participating in a 3-year employment and training programme, as well as focus groups with family members ( n = 6), support staff ( n = 7) and co-workers ( n = 6). The aim was to gain better understanding of the experience of transition to work, barriers and also the factors that promote workplace success. Main themes included factors that facilitated success at work ( Enablers), barriers to success ( Challenges) and programme outcomes ( Outcomes). Organisation support, advice from co-workers, supportive leadership, allowance of environmental modifications and presence …

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Gender Differences in Social Support Received by Informal Caregivers: A Personal Network Analysis Approach.

Social support is an important predictor of the health of a population. Few studies have analyzed the influence of caregivers' personal networks from a gender perspective. The aim of this study was to analyze the composition, structure, and function of informal caregiver support networks and to examine gender differences. It also aimed to explore the association between different network characteristics and self-perceived health among caregivers. We performed a social network analysis study using a convenience sample of 25 female and 25 male caregivers. A descriptive analysis of the caregivers and bivariate analyses for associations with self-perceived health were performed. The structural metrics analyzed were density; degree centrality mean; betweenness centrality mean; and number of cliques, components, and isolates. The variability observed in the structure of the networks was not ex…

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Perception scores of siblings and parents of children with hypoplastic left heart syndrome.

Objectives: Siblings of children with chronic medical conditions endorse a lower quality of life compared to age-matched peers. Caregiver and sibling-self report of adjustment are often discordant. Congenital heart disease significantly affects family life. To date, there have been no studies addressing the functioning of siblings of children with hypoplastic left heart syndrome, one of the most severe forms of congenital heart disease. The goal of this study was to assess the impact of hypoplastic left heart syndrome on sibling's quality of life as well as the caregiver's perception of this effect. Study design: Cross-sectional study using a web-based survey distributed via various listservs targeted towards families of children with hypoplastic left heart syndrome. Employed the Sibling Perception Questionnaire, designed to assess sibling and caregiver perceptions of adjustment to chron…

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"It doesn't exist…": negotiating palliative care from a culturally and linguistically diverse patient and caregiver perspective.

Background: The end of life represents a therapeutic context that acutely raises cultural and linguistic specificities, yet there is very little evidence illustrating the importance of such dynamics in shaping choices, trajectories and care practices. Culture and language interplay to offer considerable potential challenges to both patient and provider, with further work needed to explore patient and caregiver perspectives across cultures and linguistic groups, and provider perspectives. The objective of this study was to develop a critical, evidence-based understanding of the experiences of people from Culturally and Linguistically Diverse (CALD) backgrounds, and their caregivers, in a palliative care setting. Methods: A qualitative study, using semi-structured interviews to explore key experiences and perspectives of CALD patients and caregivers currently undergoing treatment under onc…

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Challenges for health care providers, parents and patients who face a child hood cancer diagnosis in Zambia.

Background: Zambia is experiencing high prevalence of childhood cancer. However, very few children access and complete treatment for cancer. This study aimed to document the challenges for health care providers, parents and patients who face a child hood cancer diagnosis in Zambia, and their coping strategies. Methods: This was an exploratory health facility-based qualitative study that was conducted at a Paediatric oncology ward at referral hospital in Zambia. In-depth individual interviews conducted with fifteen (15) caregivers and seven (7) key informants were analysed using thematic analysis. Results: Several challenges related to managing the childhood cancer diagnosis were recorded. Individual and family challenges were inadequate knowledge on childhood cancer, lack of finances to meet treatment and transport costs as well as long period of hospitalisation that affected women's abi…

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Carers' and service users' experiences of early intervention in psychosis services: implications for care partnerships.

Aim: To explore carers' and service users' experiences of UK Early Intervention Services following referral for first-episode psychosis. Methods: Thirty-two semi-structured interviews (16 interviews with service users and 16 corresponding interviews with their carers) were completed and analysed. Results: Carers spoke retrospectively and prospectively by framing their accounts into the periods before and since their engagement with Early Intervention Services. Desperation was evident as emotive experiences were recalled prior to referral. Relief then emerged as carers described support and engagement with key workers. Hope and optimism for the service user's prognosis and life trajectory were also expressed. Service users described similar positive experiences of Early Intervention Services and the support and insight they had gained through their relationships with key workers. They wer…

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Communication and Exchange of Specialized Health-Related Support Among People With Experiential Similarity on Facebook.

Social support is an important factor that shapes how people cope with illness, and health-related communication among peers managing the same illness (network ties with experiential similarity) offers specialized information, resources, and emotional support. Facebook has become a ubiquitous part of many Americans' lives, and may offer a way for patients and caregivers experiencing a similar illness to exchange specialized health-related support. However, little is known about the content of communication among people who have coped with the same illness on personal Facebook pages. We conducted a content analysis of 12 months of data from 18 publicly available Facebook pages hosted by parents of children with acute lymphoblastic leukemia, focusing on communication between users who self-identified as parents of pediatric cancer patients. Support exchanges between users with experiential…

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The power of symbolic capital in patient and public involvement in health research.

Background: Policy-makers and health research funders increasingly require researchers to demonstrate that they have involved patients in the design and conduct of research. However, the extent to which patients and public have the power to get involved on an equal footing is dependent on their economic, cultural, social and symbolic capital. Objective: To explore power relations in patient and public involvement (PPI) in research, particularly how patients may wield symbolic capital to develop a more equal relationship. Methods: Narrative interviews with a maximum variation sample of 38 people involved as patients, carers or public in health research, analysed thematically. Findings: Symbolic capital may be demonstrated in a range of ways (sometimes alongside or in the absence of other forms of capital): illness experience, technical illness knowledge and the challenging outsider. Symbo…

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Exploring neurodevelopmental outcome measures used in children with cerebral malaria: the perspectives of caregivers and health workers in Malawi.

Background: Progress has been made in tackling malaria however there are still over 207 million cases worldwide, the majority in children. As survival rates improve, numbers of children with long-term neurodisabling sequelae are likely to increase. Most outcome studies in cerebral malaria (CM) have focused only on body function and structure and less on outcomes within the broader framework of the International Classification of Functioning and Disability (ICF). The aim of this study was to utilise qualitative methods to identify relevant clinical outcomes in CM to support formulation of a core outcome set relevant to CM and other acquired brain injuries for use in future clinical trials. Methods: In depth interviews with parent/caregivers (CGs) of children with/without previous CM (N = 19), and in depth interviews with health professionals (N = 18) involved in their care were conducted …

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Association Between Spousal Caregiver Well-Being and Care Recipient Healthcare Expenditures.

Objectives: To measure the association between spousal depression, general health, fatigue and sleep, and future care recipient healthcare expenditures and emergency department (ED) use. Design: Prospective cohort study. Setting: Health and Retirement Study. Participants: Home-dwelling spousal dyads in which one individual (care recipient) was aged 65 and older and had one or more activity of daily living or instrumental activity of daily living disabilities and was enrolled in Medicare Part B (N = 3,101). Exposure: Caregiver sleep (Jenkins Sleep Scale), depressive symptoms (Center for Epidemiologic Studies Depression-8 Scale), and self-reported general health measures. Measurements: Primary outcome was care recipient Medicare expenditures. Secondary outcome was care recipient ED use. Follow-up was 6 months. Results: Caregiver depressive symptoms score and six of 17 caregiver well-being …

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Validation and application of the Chinese version of the 10-item Connor-Davidson Resilience Scale (CD-RISC-10) among parents of children with cancer diagnosis.

Purpose: Parents of children diagnosed with cancer often experience considerable emotional distress for their children with negative emotions, such as disbelief, depression, anxiety, hope and shock. Resilience is defined as the psychological characteristics that promote positive adaptation in the face of stress and adversity, which has been demonstrated to relate to positive coping and less psychological distress. Thus, a quick screening tool to evaluate the levels of resilience of parents with cancer-diagnosed children is urgently required. Methods: The Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA) were used to evaluate the CD-RISC-10 using a sample size of 500 parents. Velicer's Minimum Average Partial (MAP) Test and a parallel analysis were also supplemented to confirm the EFA-derived structure of the scale. The participants were given the 10-item Kessler Ps…

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